Saturday, 2 October 2010

Thyroid disease: the silent majority.

Because I am a woman with thyroid disease, I am not necessarily crazy. Because I am a woman with thryoid disease, I am still capable of holding a job, or staying at home, without being driven crazy. Because I am a woman with thyroid disease, I am not necessarily over or under eating. I am normal, I am just ILL DAMN YOU. Look, the woman on the right is happy, because back then, you just got a pig thyroid and it worked.

Yes, it's a visit to those crazy endocrinologists. Hey, how about this, you endo guys. (They say, in their big swanky offices). Why don't we, just for a laugh, get ourselves put in charge of an almost wholly female disease, and be mostly male ourselves. Then let's hone our patronising gland till it is as big as an airship. Then, after our patients, driven to us by misery, aftera torturous referral "service", turn up, let's discount everything they read, know, and feel, in favour of a sodding blood test. And oh, let's make the test we pick the most useless, generally unhappy making one. And when they visit, we can point to the test and say "We know best. We are men, we have never had this disease, but we went to medical school. We recieve visits from drug companies that give us golfing weekends, and this dictates our drug preference. We will not allow any other drug, because then people might start thinking we are soft. We are the endocrinologists, men who really don't like women that much".

How long did it take to get diagnosed? 10 years. How ill was I to get taken seriously? Nearly dead. How ill am I now? I am ok, but I have niggles that are not taken care of by my one and only choice of prescriptive drug. I thought i'd see if I could have another. Bad idea. Your (healthy) thyroid gives out hormones called T1, 2, 3, and 4. When your thyroid has gone kaput, you get given replacement hormone. But only 1, T4. The others can go hang. According to the British Thyroid Association (men), this is just dandy and fine. (So what were the other 3 horones for then, exactly? Window dressing? A trick of biology?). So, here I am facing a life with only 1 hormone out of 4 replaced on a daily basis until I DIE. You know, it doesn't work for me. I don't absorb it. I'm on a MEGA dose. And yes, dumb endo, I do take the tablets "properly" (did he think I didn't know how to take them? Gave them to the cat instead?) I still have thyroid symptoms. But, the designated test shows i'm hyper, not hypo, according to the dumbfuck endo. My TSH is 0.02, my T4 is 16. It took me years on a mega dose to reach a T4 that good. Good is 18-24. So, I say, "I've been hyper. I was skinny, eating for England, panicky, not sleeping, pooing 7 times a day and manic. Now, i'm not eating, gaining, backed up, my hair is falling out, i'm practically dead in the water, i'm NOT hyper." I point this out. Endo says, I quote "But you wouldn't know if you were hyper". I say "I would, I just told you". "But he moved on. "Having a surpressed TSH will kill your heart" "Only if I have symptoms, I don't". "It will ruin your bones" "Research says not" "Have you been reading on the internet?" "Well, yes. I have a lifelong condition that i'd like to know about. I'm not an idiot. I can read abstracts and articles from Medline as well as you do (or don't). I know there are alternatives. I know I can have a dessicated thyroid as treatment instead of T4 only. It will give me T1,2, 3 and 4, and might just make me able to function again. How about it?" "Well, it's unstable". "Well, my generic T4 is unstable. You just told me I could have a named brand on prescription, because some generics are unstable. What's the difference?" (silence). Result, a reduced dose, no hope of a new medication, and an anger that makes me boil. My last chance is my GP who may, just may, agree to do a "named person" prescription for the terrible substance that is not golf-weekend giving pharmaceutical thyroxine but natural. What are the chances of that happening? Nil. Excuse me while I venture out into the online world of prescription free pharmacies. I am 38. I am not prepared to stick with one medication, that does not work, for the rest of my life because the NHS says so. Think of any other illness that has no choice of treatment.Find me just one.

Why does this happen? Because 99.9 % of people affected by thryoid disease are women. Because there's no money in providing another option. Because generic thyroxine is cheaper than natural, and it's the only one they're prepared to give out free. Because sadly, it's seen as ok for women to remain at a below par level of wellness,because it's "as good as we can get you" (yes, really, I was told that). Or because it's easy to say "Well, it's your age" (I'm 38!) or "having children takes it out of you" (so that's 50% of the population written off, is it? There was me thinking it was my THYROID). And the one female endo, who you might have expected to be a little better, also diagnosed me as being hyper. She has super powers, because she did this through the wall without even seeing me. Wow! Women unite. So I will see my Gp on Monday, to persuade him to allow a trial of dessicated thryoid, which I will have to pay for, and source, and that's IF he says yes to my trying. If he doesn't, i'll be buying it without a prescription, and dosing myself. I won't be alone. There is a whole subculture of women, tired with being fobbed off doing it, at their own expense, because they couldn't face another 20 years ona drug that doesn't make you better than "i'm coping, just". How wrong is that?

It makes me angry. 1 in 50 women has this disease, yet there's no publicity, getting diagnosed is a nightmare, it affects fertility, pregnancy, menopause. It accounts for depression, Post-natal depression, and myriad health related problems. Yet it is consistantly undertreated, women are not, for the most part even given their results properly, if the correct tests are taken (I was told "who's the doctor, you or me?" and "you don't need to know the numbers, that's for me". "Have you been reading?" "You're within range, that's all you need to know" Except I wasn't. For 10 years. ). The NHS would rather fund anti-depressants, and weight clinics, when a little extra throught to the cause of the problem would eradicate the problems for many many women. could this be something to do with the way drug companies work with the NHS? Possibly. Definately something to do with the fact that it's women affected, and sadly, when you're feeling unwell, you are very unlikely to confront the doctor, and they know it. Women: get your angry pants on. If you have thyroid disease, here are a few pointers to getting treated properly.

1. Get the results. Get TSH, T4, T3, and TPO antibodies tested. Get the numbers. If they won't give them, say you'll go to Data Protection. They're yours. You own that data. Then get the ranges for the numbers.

2. Find someone to help you interpret them. Me, i'll do it. Or the thyroid mums thread on Netmums, or the Thyroid UK website will help.

3. Go in armed and dangerous. Insist on taking the meds and upping them until you are at TSH of around 1 and T4 of around 18-22, and feel well.

4. Take selenium, for antibodies.

5. If you are trying for a baby, tell your GP. Your TSH needs to be at around 1, or the change of miscarriage is MUCH higher.

6. If you are pregnant, likewise. You will need to increase meds whenever, GPs will say by 25%, rubbish, less for some, more for others. Test every 4-6 weeks.

7. After a while, they will say "it's a yearly test for you". Ok, but if you feel crook, GO BACK.

8. Menopause will most likely come earlier, be nastier, and will need dose adjustment. Get your angry pants back on, now you are not only an annoying sick woman, but you're old, and will be treated even worse.

9. Safety in numbers. If you can't get heard, take a friend or partner. And if you still can't get heard, change Gp's. I've been through 10. In 4 years.

10. Read. Learn. I can guarentee that by reading one book, you'll know more than your GP does. He learnt it all in 10 minutes at med school. And then forgot it.


Mary Shomon: Living Well with Hypothyroidism. A fab book.

B Peatfield: Your thyroid and how to keep it healthy, the great thryoid scandal. This is by a guy who was actually done by the BMA for daring to suggest that dessicated thyroid might be ok for some people.


Netmums thryoid mums club: a support thread I started and which is now HUGE, very supportive.

Stop the Thyroid Madness: fab stuff on why single T4 is so bad, and what to do to get dessicated.

Thyroid UK: a patient advocacy support group and charity with some excellent advice pages.

Thyroid disease .org: a wide ranging support board.

There are many more, but these represent a good uk selection. Mary Shomon runs a great "About" site on the thyroid, which is very informative, but it is best to start on the UK sites, as the test ranges in the USa are better. Here, you have to be practically dead to be diagnosed. In the USA, they are more sympathetic and dessicated is diagnosed regularly, also T4/T3 combination therapy. I want to move!

Wikipedia: on Dessicated hormone.


Fenland Textile Studio said...

Sorry to hear life is so rough at the moment. It is so crap that the NHS bases everything on cost. You are right that if it affected so many men there would probably be a huge shift in attitude. I've had a totally crap week as well, and to make things even worse I've been at tne hospital with DS2 since 2am. He is now asleep, I'm doing washing and ironing! Look after yourself. Hugs Angela

Jan said...

Amost interesting post well researched ,and what a good example the pictures show , Jan xx


Thankyou for this information. It is invaluable. I will keep it bookmarked x

Plum Cox said...

Thank you for sharing and being so passionate about informing us. Much sympathy to you for suffering with this - horrid.

Keep blogging, please!

Gebie said...

In addition to taking natural supplements for thyroid , it is very crucial to exercise regularly and drink too much water on a daily basis. If the thyroid is in good level, you will be amazed at the transformation.

Fenwitters said...

Gebie, this is nonsense and dangerous at that. Natural supplements for thyroid in nearly all cases contain iodine and kelp. This is actually DANGEROUS to take if you have autoimmune thyroid disease, as it can cause an antibody attack and worsen the existing problem. There is a huge industry built on conning women to take this stuff that may actually be making the worldwide problem worse. There is only a VERY small iodine belt in the world that actually needs this sort of supplement. Drinking huge amounts of water won't make any difference either.

Deanna said...

It's the year 2016 as I type this comment. I just came across your blog and was reading about the thyroid issues. At 55, I was diagnosed with thyroid cancer, had my thyroid surgically removed in two surgeries than did radioactive ablation. I faithfully took synthetic thyroid T4 only treatment for 5 and a half years. I am now trying Armour Natural Desiccated Thyroid Hormone. Will see how it works. I understand how using T4 only affected me. Hours of researching on the internet. My endo and his nurse did not want me reading articles about thyroid treatments since they only use T4. When you read about the international and american thyroid associations you find out that synthetic T4 is their choice of treatment. But who decided this? It's the synthroid that is unstable. Those that manufactured it danced around the FDA and got away with not being approved by the FDA by selling the patent to other manufacturers before allowing the proof that the shelf life of synthroid was stable. Finally it got FDA approved as a new medicine when in reality it wasn't new. Armour gets a bad rap by endos when they say it's armour isn't stable, but really it's synthroid that's not stable. Politics has entered the game as synthroid is the second most prescribed med and makes billions for the industry. When this med is patented because it's synthetic...the market cannot patent Armour because it's natural med therefore the market cannot patent this med that works containing more of the thyroid hormones than synthetic T4. My own doctor said that this T4 is just like the hormones his thyroid makes. Synthetic T4 may be similar to real T4 but not identical. If it were they wouldn't be able to patent it and make the billions that they make. When you are not getting all of the thyroid hormones that a healthy thyroid makes, it affects the brain and it doesn't work as well as it should. What I found out is that muslims and jewish people do not like pig products. If you investigate the people on the boards of these thyroid associations there are people of the muslim faith as well as the jewish lineage. Synthetic meds for them and no pig products.