Thyroid problem

[Healthy]

Why does my thyroid function keep changing from Under-active to Over-active.. I take 100mg of thyroxine and my GP wants to reduce to 75mg as blood tests show it is over.. I have a problem with insomnia, Palpitations, and have developed the nail disorder onycholysis. My skin and hair is very dry.. Any help or advice out there please...

[helvella Administrator]

Do you always have the blood drawn at the same time of day? Do you take a tablet before having blood drawn?

Have a read of these blogs:

thyroiduk.healthunlocked.co...

thyroiduk.healthunlocked.co...

Insomnia and palpitations and onycholysis can all be associated either hypothyroid or hyperthyroid symptoms. Doesn't make it easy,does it?

Rod

[Healthy in reply to helvella]

Thanks for the reply. I didn't know the symptoms could be associated with both..

[Healthy in reply to helvella]

Thanks for your reply.. Usually have blood test in the morning and not much after having taken my Thyroxine.. Something to think about there I see! I will look at the blogs... Many thanks ...

[Jackie]

Hi Also make sure that you have the 3 thyroid basic tests, TSH, T4 and Free T3, even if you end up paying for them, they are essential for the correct treatment.

Best wishes,

Jackie

[Healthy in reply to Jackie]

Hello thanks for the reply.. I will look into this although I must admit I have never heard of any of these tests.... I have taken Thyroxine for 29 years now, you would have thought I would have been aware of this..

[Jackie in reply to Healthy]

Hi Things have altered so much over the years. I have Hashimoto., years ago we just called it Hypo!As Rod says , vital not to take any thyroid treatment ( or Beat Blockers ) on the morning before the test. I have lots of tests 2 to 6 weeks because of co morbidities, thyroid fine. I used to experiment. Now Vets will not test a pet if they have had the thyroid meds, that day. I keep telling my GP this!!!

Also of course, you could not have T3 in those days. if you changed from armour ( the only other drug then) to Levo ( T4 ) that may be the problem. Also the thyroid does often get worse over time.

Best wishes,

Jackie

[Healthy in reply to Jackie]

Hi Jackie ,I must be very naive as I don't know what Hashimoto is so will google it.. I have had under active for 29 years and know very little about it as there wasn't any info then.....I always remember the specialist shouting at me as if I was deaf and he thought I was unable to understand him... By getting worse what would that mean?.... I am going to see my GP armed with my new information and see if I can get a better understanding of the workings of the Thyroid So glad of your advice I am going to look on Thyroid uk. and see if I can understand it better. Bet

[Jackie in reply to Healthy]

Hi Yes I know, I have had it 50 years. It was just as hard then getting diagnosed. You would think things had improved! Doctors just looked at you and no specialities to speak of.Hashimoto is Hypo but it is autoimmune. Any autoimmune condition often means there are more lurking! As my Hepatologist says, they like to hang around together.You just have to wait until they turn up! More and more diseases are now called autoimmune, even things like migraine.I eventually saw a private doctor but he did no tes No info either, of course, no WEB or TUK etc. only about 7 years ago I saw a private endo, I could not believe the difference , I was positive for nearly every thing connected, never tested before! Also, of course, thyroid disease tends to get worse with age!

So get studying!! The main thing is if you have thyroid disease, it should be controlled and you should feel better with the right treatment for you.

Best wishes,

Jackie

[Healthy in reply to Jackie]

Thank you for all your good advice , and I will certainly do some studying. It was a good decision to go private some times it is the best way to go... All the best and thanks again.. Bet..

[lilliput]

I suspect that I may have had the same problems over the years. Apparently you can have surges in thyroid production, with thyroiditus and in the ealy stages of Hashimotos. I have very mixed symptoms now,although I'm officially underactive. Still awake for one thing, chronic insomnia, plus not much in the way of weight gain. I do findi t difficult to lose weight now, however, just assumed it was the menopause.

A few years after getting a borderline result I lost weight for no apparent reason, about a stone in 9 months. Shortly afterwards I felt horribly ill with racing heart, sweating and shaking. I assumed it was stress but the symptoms were very physical. It could have been stress but I wasn't tested so who knows.

I think that the bottom line with all the anguish and suffering that people on this site have gone through, myself included at times, is that there IS something wrong and that doctors should, as the experts , investigate. My first doctor was awful. He put everything down to lifestyle, and eventually claimed Ihad chonic fatigue syndrome.My main symtomat that time was feeling tired, plus I had frequent sore throats. No blood tests were done.

My second and present doc is much better. He immediately did blood tests which is when the borderline reading came about. I think thatImay have apredisposition towards being flaky ie depression, strss, but over the years have come to know myself.I have a grounded side. When first

[Jackie in reply to lilliput]

Hi Make sure your Free T3 level is high enough, blood test, T3 along with levo ( T4) if needed. It may lower the TSH. However,a lot of symptoms and especially weight are due to low Free T3. If GP will not test, you can pay, I pay£61 for the 3 tests. Essential,it is only cost that stops them testing now.They always did even though there was no T3 available!! The body is meant to convert T4 to Free T3 but often it does not, or suddenly stops doing it properly ,so T3 on a script may make a huge difference.

I hope this helps.

Jackie

[lilliput]

Sorry left mid rant

[lilliput]

Depression is a horrible illness, as is underactive throid. Docs thoughshould be sure of which one needs treating.

[Healthy in reply to lilliput]

Thanks for the reply very helpful ..I have been up and down for the last 7 or 8 years.. I was on anti-depressants and sleeping tablets for many years and about 4 years ago went through a very anxious time in which I lost 2 stone with anxiety and palpitations, Thyroid was over, then under, couldn't eat or sleep I was unable to function at all.. I started exercising and tried the breathing for calming and gradually came back to a normal life, but a determination to come off all medication except Thyroxine .. It has been a struggle but it has been 14 months since I took any anti-depressants .I was wondering if the anti-depressants caused it to go under in the first place??? Thyroids are a nuisance hahah

[ellarose1234]

I have had the same problem being both hyper and hypo. I believe my problem is Hashimoto's and every so often my thyroid starts to produce thyroxine and I am therefore over medicated. Have had this happen so often I just reduce my thyroxine and then after a couple of weeks try to up the thyroxine gently and if no palps then I continue to try and increase to what I was on before problems. Not sure this is the way to go about it but seems to work for me. I still have regular blood tests and doctor seems to be used to my odd ways We are not machines and our bodies all function in different ways and after 15 years on medication I think I am getting used to what it wants! Or doesn't...as the case may be.

[Healthy in reply to ellarose1234]

Good I like that and fully agree.. I have been on Thyroxine 29 years and maybe this is the way it will always be.. I keep looking for an answer to how a little gland can control so much...

[Hashi_since_age9-1988]

because 25ug changes are too big. you may benefit from T3/T4 combination treatment.

[Healthy in reply to Hashi_since_age9-1988]

Hello Hashi, I have never heard of T3/T4 .My GP gives me a blood test and adjusts Thyroxine accordingly.. I have been taking it for 29 years and never heard those numbers.... thanks

[Hashi_since_age9-1988 in reply to Healthy]

T4 is shorthand for thyroxine and T3 is shorthand for liothyronine. Thyroxine is a storage hormone and is converted into liothyronine (the active hormone) by the removal of an iodine molecule. The thyroid normally produces thyroxine and liothyronine (as well as other hormones like calcitonin) but doctors only replace the thyroxine as they believe, perhaps wrongly, that that is good enough. We believe them and dismiss our symptoms for years/decades then eventually get sick of feeling crap and end up on these forums looking for solutions!

By giving us only thyroxine they are assuming that our bodies are able to convert it to the active hormone in sufficient amounts and this is not necessarily the case. Generally if you look at the blood levels of T3 and T4 of a person on thyroxine compared to a healthy person they have higher T4 levels and lower T3 levels than the healthy person. In order to compensate for this difference people on thyroxine generally need to be on a higher dose that give a high T4 blood level and a lower than normal TSH in order to feel more normal.

The other option is to copy nature and give the patient a combination of T3 and T4. I have felt better the last 10 years on T3/t4 treatment than previous 13 years on just thyroxine.

The other issue is the TSH range. The 'normal' range is too wide for optimum health, generally 0.3 - 4.5. I'd say it is better to keep your TSH between 0.5 and 2.

The third issue is that the thyroxine they give us is synthetic and not identical to natural thyroxine so some people prefer natural hormone in the form of dessicated animal thyroid (NDT) eg armour of erfa as these contain all the hormones produced by the thyroid and are natural. Its what used to be used to treat patients in the past - until the 70's I think so relatively recently. This can be more difficult to get hold of than liothyronine and you generally have to go private with specific doctors to get it.

You should give T3/T4 a go. I am on 10ug T3 and 125ug T4 at the moment and generally keep my TSH around 0.5. For every 5ug T3 you add in you need to reduce your thyroxine by 25ug.

Also never take a doctors word for it when they say your blood tests are normal. Always get a printout and aim to keep your TSH below 2.

Hope this helps!

[Healthy in reply to Hashi_since_age9-1988]

Hi Hashi , Thank you for your very interesting reply.. I can not believe I knew nothing about T3 and T4.. I have taken my levothyroxine for 29 years and thought that was all there was to it. I thought feeling down and lethargic and the skin and nail issues were just because my thyroxine was too low or too high, not realising there may be something else I can support the thyroxine with... I will ask to be referred to a Endocrinologist privately as I would love to have a lovely sleep and feel a little more relaxed.. Many thanks Bet..

[Terricotta]

Hi Healthy, the problems you describe sound like they're due to prolonged stress. Stress interferes with metabolism. The thyroid is at the root of metabolism. There may be some days when your thyroid is in a position to function correctly, because stress has (or stress hormones) temporarily disappeared. I'm not convinced that a single blood test during any particular day can provide an accurate picture of how a thyroid is funtioning. Some times the feedback mechanism that the thyroid relies on is just about to change tack and hormones have reached their peak, but just about to drop. If a blood test is taken at this point then the reading is going to be wrong. I believe the symptoms you describe, as I say, are related to prolonged stress, whether this is internal or external. It may be that too much thyroxine is doing this (or perhaps unnecessary thyroxine?). It would certainly cause physical stress. It did with me.

[Healthy in reply to Terricotta]

Hi and Thank you . I agree stress plays a big part and I am always looking for ways to reduce this.. I did see a cardiologist about the palpitations and he told me I was very sensitive to the Thyroxine. He recommended I reduce Thyroxine and add a beta-blocker. I don't want to take beta-blockers so I am looking for other answers... What do you mean by unnecessary ? Is it possible for the Thyroid to start working correctly again after 29 years?

[Terricotta in reply to Healthy]

Hi Healthy, sorry for the delayed reply. In my case I believe thyroxine was unnecessary. The lowest dose caused my BMR to rise considerably (I have a very small frame so the dose could have been too much), which lead me to believe that I didn't actually need it. Once off it things returned back to how they were before I took it. I've not taken it since.

[Healthy]

Hi Terricotta , I have been wondering if it is possible for the thyroid to correct itself.. Were you on thyroxine for any length of time? I have been on it 29 years but it is up then down never steady.. I have been on selenium from the health shop for about 6 months as I read this can help support the thyroid, and my test shown my thyroid was over so maybe it has improved.. I will have another test in 3 months so I am interested if this will show any more improvement.. thanks for the reply.. Bet

[shezz]

Well I didn'tknow that u can go to been over active to under. I allway rhought once u been diagnosed one r the orher that was it

[Healthy]

Hi Shezz, I have often had to reduce or increase my thyroxine after blood tests. I was wondering if perhaps taking vitamins to support the thyroid improves it.. I went on to selenium about 5 months ago which is known to support the thyroid and my tests indicated the thyroid had gone over, so I have dropped to 75mg. now.. I have read a lot about the certain tests over the last few days ,thanks to all the useful information I have received from the people on this site, very helpful..