Different sympathetic GP!

[Valeria]

I am the lady who after being referred by a female sympathetic GP last January to the hospital only to be spoken to like a piece of dirt. The consultant then asked me to leave her surgery as I was wasting her time. This appointment happened last March. I went back to a different GP who wouldn't listen to my symptoms either (the female GP had left the practice). My Mum then passed away suddenly in June and then a further sudden bereavement with my Aunt dying weeks later. The GP then said of course I am depressed and will have many symptoms; 'your Mum has just died what do you expect'. Now winter has arrived I feel so ill, freezing all the time (legs/feet and hands hurt when they get cold and cannot get them warm), tired all the time, can't concentrate at work, constipated, temperature is 96 deg before I get up, etc., etc. I again took my husband for moral support on Wednesday to a different GP who the nurse said is good at thyroid problems. My husband only came with me as he is fed up with me not only having all the symptoms but constantly arguing with him over such trivial things! Walked into GP's room and after he listened to me for 20 seconds said 'of course you can have medication as I treat the symptoms and don't rely solely on blood tests'!!! A result you may think but after taking one 25mg tablet yesterday and another first thing this morning I feel terrible (even worse than I was before). I had to come in to work as very short staffed but have felt terrible all day, dizzy, sick etc. I probably need to give the tablets time but cannot feel like this over Xmas period as I am catering for family every day for a week. Any advice would be gratefully appreciated.

[Clarebear]

Hi Valeria - great news that you have found a sympathetic GP who isn't totally fixated on blood test results. Sorry though that you are having these horrible symptoms on thyroxine Unfortunatley I felt worse on starting medication too, I don't think it is that uncommon. For me it took a week or two for things to settle down a bit and a few more weeks to start to feel better. This also happens to a lesser degree every time I increase my dose too.

If you are able to continue that I would do that but if it is making you feel to ill over Christmas perhaps you could try 25mcg every other day and then go back to the 25mcg after Christmas? You could always stop entirely until after Christmas and then start again every day or every other day. Unfortunately it does seem that the body has to get used to having thyroid hormones available again.

Hope you feel better soon. xx

[Valeria in reply to Clarebear]

Wow that was a quick reply. I though it wouldn't be plain sailing but I was very worried as I felt so weird driving to work and then because I was on my own in the office most of the day it was difficult to concentrate on tenant's problems. I am a housing officer and need to have my wits about me all the time. I will start again after Xmas, my GP did want me to take 50mcg but not straight off, perhaps Shaws is right and I might be better off with the high dosage. I will try with the glass of water and then not eat for 1 hr later. Thanks for your advice.

[shaws Administrator]

First of all, I am very glad your final GP was sympathetic and medicates on symptoms as well as the blood test.

The dose of 25mcg is a starting dose and it may take a little while for it to take effect. 50mcg I would think is the usual starting dose as when I saw the consultant he told me 25mcg was too low. Initially it is usual for the GP's to take new blood tests after about 4 weeks and increase up to the next level. Hopefully your GP suggested this. I was also prescribed 25mcg when first diagnosed (TSH 100) and felt dreadful too but when I increased to 50mcg began to feel a bit better and increased every few weeks till I got to 100 mcg. Hopefully your GP suggested this. If not, phone and ask if you can up the dose to 50mcg as the 25mcg.

The problem is if you have a thyroid gland problem, because symptoms cannot be seen others do not know how unwell we feel and it is difficult to explain.

You should take thyroxine immediately first thing a.m. with a full glass of water and not eat till about 1 hr later so that nothing can interfere with the uptake. Some find taking it last thing at night (not having eaten/drink about 1 1/2 hrs before) suits them better.

If you get a copy of all your recent blood test results and post them here someone will comment. Also has your GP tested your B12 and Vit D plus folate and ferratin.

Someone may suggest others tests.

I do hope you feel better soon although I must admit it is a slower process than we would like.

[deskplant]

OK, what are your stats - TSH, T4 and T3? You don't say. If all these are fine it may not be your thyroid and something else like Type 2 Diabetes which can present with some similar symptoms and for which thyroxine will do nothing.

However I'm severe hypo and what you report happened to me. I thought I was dying. I felt so ill I came off the Levo and advised my GP they made me ill. I never got back to my former level. Each time I tried 25mcg this cycle of illness happened - even 50 mcg nearly killed me.

Why? It's too low. In some severe and chronic people who have low thyroid function, adding just a little switches off whatever you may be producing naturally. Hypothetically let's play with some numbers. You are hypo so you only produce only 100mcg, so add 25mcg Levo = 125mcg equivalent.

Yet what happened to me was e.g. I produced 100mcg, so added 25mcg Levo = 125mcg, body stopped natural production so only had 25mcg Levo. Thereby making me considerably worse than when I started out. This is explained below is old, old school. Having suffered extensively I was so grateful to find this explanation - then a living fury at what it had done to my body. This is EXACTLY what happened to me in 2005, 2007, 2009 but I only read this explanation of of what it was actually doing to me in 2011.

Here is the beautiful may God light his way to Heaven, Dr David Derry:

"Unfortunately the TSH test approach to diagnosis and treatment lowered the dose used to treat patients considerably. The effective dose physicians used by clinical judgment and experience before 1975 was around 2-3 times higher than the dose used by TSH blood test monitoring. So everyone's dose of thyroid after 1975 was decreased by about two thirds of well established clinically effective doses. It is my personal view that the change in 1975 from clinical assessment of the patient to laboratory testing for thyroid diseases was a mistake. But perhaps this is because I was trained in the 1960s to do clinical assessment for thyroid diseases. However there is no doubt whatsoever that the higher doses are better for the patients and there are no side effects what so ever (short or long term) when these higher doses are used. (Toft) Patients get their lives back and carry on with the need for constant physician monitoring. Once a good effective dose of thyroid hormone is established which makes the patient feel good, cope well and get on with their life, medicine had accomplished what I call a cure. The patient has much reduced need for a physician.

Physicians before 1975 found the minimum clinically effective dose for hypothyroid patients was about 180 mg of desiccated thyroid or 180 micrograms of eltroxine (T4). (2) Physicians of the 1960s had great difficulty detecting any effects clinically or by laboratory tests, for patients on doses lower than 180 mg. Therefore your dose of 60 or 120 mg is not likely to work. ********THIS BIT>>>>> ********* At the same time that dose of thyroid will likely turn your thyroid off. This means you will only feel the benefits of the 60 mg of thyroid you are taking. But if your thyroid gland beforehand was putting out 100 mg of thyroid then you have just lowered your thyroid levels. This could account for feeling worse when you started on the medication. **********<<<<THIS BIT***************** Likely a desiccated thyroid dose around 180-300 mg will solve your problems."

And the whole link:

thyroid.about.com/od/drdavi...

And another one too which is worth reading (all his are gold dust but this is useful as well for you at this point I think).

thyroid.about.com/od/thyroi...

[Stourie in reply to deskplant]

So so interesting. Thank you

Jo xx

[waveylines in reply to deskplant]

Am with you deskplant. Dr Lowe said exactly the same thing -sadly i can't find the link... if you take too low a dose then you will feel worse because your body will not produce any cos it think it has some already. I was put on 50mcg when first diagnosed (moons ago!lol ) and then GP did not increase my dose for ages -so of course having felt initially a little better I crashed.

Have you tried taking the 50mcg Valerie? Might be worth a try. x

[deskplant]

to note 180mcg of dessicated thyroid is equivalent to about 3 grains. When I made my jump to NDT - I started at just 2 grains and it was amazing. But without bloods or more details this is a possible explanation only. I hope this helps you though, good luck xx

[tavy]

I cant say I felt better for many months and did feel rather ill after the first few days. however it is all Ive ever been offered. I have heard of someone who was allergic to thyroxine, You need to see a different endocrinologist. tough I know they wont refer me here.

[Muffy]

It's probably just a shock to your system after all this time of being ill. Hang on in there, and hopefully you will start feeling better.

[Kangagirl]

The fact that 'everybody is different' doesn't make it any easier. When I was accidentally diagnosed in 2000 I didn't have any hypo symptoms except fatigue, which was manageable and I had had that since 1972 when I had some kind of flu virus which left me with CFS - I don't know if there was any thyroid involvement, I suppose it's possible but I was never tested at the time.

I began on 25 mcg of levo which was increased over the years to 125mcg, and never felt a scrap of difference - I imagine my then GP was going by my TSH. He used to say we'll increase it, and if you feel less tired we'll know it was your thyroid - if you don't, it will be the CFS. But I didn't feel any different - no better but no worse either. I was never going to feel 'great' with the CFS which is very erratic, but I was generally OK - functional anyway. I could do most things that I wanted or needed to as long as I was careful.

Meanwhile, over the years I did lose just about all my body hair, and for the final 3 years on levo had an itchy bumpy rash on the bottom of both legs - coinciding with my dose being raised to 125mcg, although nobody made any connection, least of all me, at the time.

Then in March of this year I had a really awful reaction to the levo - hyper, hammering heart, nauseous, anxiety, huge adrenalin rushes, hot flushes, anxiety that had me in tears all day long - you name it. This was at a weekend so no way to contact my GP. (His second name is The Scarlet Pimpernel - they seek him here, they seek him there...)

I didn't know if it was the levo, in fact at that time I was abysmally ignorant about the thyroid, but it was all I could think of and stopped taking it. In retrospect I perhaps should have started again a few days later at a lower dose, but I felt so much better without it that I didn't. I felt very well for about a month, after which of course I began to go downhill.

Since then I have tried 4 times to go back on levo and have felt so bad I really thought I might die. I could manage about 3 days on 25 mcg before I had to stop. So should I have doubled the dose? Was I taking too little? I don't know, and was too ill and too scared to try and find out.

Most people on the forum know a great deal more than I do about all things thyroid so please don't get me wrong - but if something make you feel very ill, could it not be that in some cases it just doesn't agree with you, and the answer isn't always to increase the dose? The very good endo that I now see has said that an intolerance to T4 can crop up at any time for no apparent reason (I said I couldn't understand how I was OK on levo for 12 years, but now can't even tolerate a small dose). So perhaps some people are intolerant to it right from the start. Somebody else on the forum said she was on levo for 28 years before becoming intolerant to it.

I tried a small dose of NDT and again had to stop every few days. The last time I ignored the side effects and went for the 'take more' strategy. I upped the dose instead, upon which I had violent stomach pains and Dire Rear to add to the headaches, dizziness, nausea, anxiety etc etc.

Nine months down the line, having lost a stone and a half which I couldn't afford to lose, and feeling so ill for so long I am desperate, I am now trying a very small dose of T3 - having made efforts to improve my vitamins and iron. I don't know if this will help or if I will be able to tolerate it - I have had some headaches and dizziness even on a miniscule dose, but am trying to stick with it because there is nothing else left, at least nothing that I can get my hands on. I will never go near levo again, and wonder if perhaps I am now allergic to T4 in any form, even the natural form in NDT. That's the trouble - you just don't know.

I just wanted to raise the possibility that sometimes T4 treatment just isn't right for somebody. Often of course it WILL be a case of having to raise the dose to get any beneficial effect, but this isn't always the case and it is very hard to do this if it makes you feel so sick and ill every time you take it. Hats off to those who are able to battle through the side efects, increase their dose and come out improved on the other side, but I'm afraid I haven't been able to this and feel something of a failure. I will always wonder if I should have taken a higher dose no matter how sick it made me, but I didn't have the strength to do it.

Kanga x