So confused what my body is doing.. So poorly

Hi all

I am back.. I have written a long saga of problems taking thyroxine.. But this is where I am now.

Thyroid removed due to graves put on 100 of levo.. Never been well even first day I took it breathless face, eye lids swelling, high bp, agitation etc .. Then I noticed after a month hairloss.. Anyway got really poorly gastritis etc bed bound for last 2 years.

Anyway I had been on injections helped with stomach but still nausea, sweating head all over the place etc .. Alrhough he said blood test ok. That consultant gave up with me and basically said it could not find any reason for thyroxine to do this.

He put me on pure thyroxine tablets 100 a day since last march. Tsh jumped up to 29 and t4 and t3 low. I have battled with side effects bed bound, nausea, sweating swelling of face, hair loss .. List goes on.

On the 21at November tsh had come down to 12.5 t4 and t3 in range but low..

Found out vit d was 16 was started on high dose of d3.

Through December I was getting worse.. Now these what my results showed.

9th jan Tsh 0.01 t4 34 t3 6.6

Told to stop taking levo for a week

19th jan tsh not known but t4 17.4 t3 4.9

Told to take 100 levo for 2 days then miss a day and so on. Not getting any better

29th jan tsh 0.1 t4 19.8 t3 4.9

5th feb tsh 0.1 t4 22.5 t3 4.7

Still anxiety sweating nausea, hissing in head can only sleep 3 hours at a time wake sweathing anxiety etc.. Gp said to take 100 every other day.

25th feb tsh 0.4 and t3 and t4 was not done which is not help to me..

Saw consultant yesterday and still insists levo cannot cause symptons but cannot explain what's going on with blood results.

He has now said to take 75 levo a day? So obviously he was not listening when I said I had been reduced to 400 a week.. Ie 100 every other day.

My b12 is over 500

Vit d now vey high in range

Folate is now 24 range 3 - 17 ( originally was 3.1 put have been taking folate)

Iron was 38 rang 12 -300

But is now 34 even after taking tablets which I had to stop as seem to not help with symptons .. Stomach probs constipation

On top of all my symptoms my bp is all over the place .. My boobs hurt like hell and my hair looks greasy but is dry with still hair loss.. Only a third of my hair left now

Any ideas much appreciated

Fionna

13 Replies

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  • Iron, was that Ferritin? Ferritin of less than 70 can result in hair loss.. there is proper double blind study conducted by L'oreal which shows this.

    Have you tried spa tone sachets? much gentler on the stomach that iron tablets - available in tesco and otc at most chemists..... the apple flavor ones are perfectly palatable.

    Not really sure what pure thyroxine tablets are... I know you can get liquid which has no lactose in it but the tablets, as far as I know all have fillers in. Some of them contain acacia which is pretty awful stuff if you have any sort of pollen allergy.

    The sore boobs might be down to a progesterone estrogen inbalalnce? I know mine got better when I started using serenity progesterone cream....... although the consultant tried to tell me I had wasted my money.... My boobs, my money to waste was my reply :-)

    No help at all just getting a tsh test and having an endo who simply is out of his depth. Suggest you ask Louise ( admin) on here for the list of half decent endos (nhs) and then see if you can get a referral to one of them... The doctor is able to refer you out of area although they grumble a bit.

    Hope this is a start.....

    G x

  • Hi

    Yes I mean ferritin.. I will try what u said.. I have seen many endos but they don't know what 2 do.. Even tho I look a mess and test results have gone stupid they still say no thyroxine related and want 2 refer me 2 psychiatrist. He would entertain my suggestion of taking the tablet I front of his and return in 4 hours to show him the difference in me.. I even saw the late dr skinner who prescribe armour which helped a little but because I was so ill will my stomach it wasn't the answer.. Levo injections sorted my stomach 2 a degree but having 300mcg injected a one time did me no favours .. So back on levo tablets and still taking anti acids.. Pure thyroxine r tablets r specially made, mine r with only cellulose.

    Thanks for your reply

    Fionna

  • I think they would do you a big favour if they drop the levothyroxine altogether and give you a trial of liothyronine or NDT. I was so unwell on levothyroxine and had many more symptoms than before my diagnosis.

    If I had a young child who was given medication and took a 'turn for the worse' and who couldn't communicate, would I not go by how he/she appeared and ask for the medication to be changed. or would the doctor insist that that's the only one available. What kind of doctors who insist that a particular hormone/meds cannot be the cause of the continuing ill-health of a patient who is bed-bound.-

    There is a natural dessicated thyroid hormone too, which is hypo-allergenic. Why cannot they prescribe an alternative for you. There is a case going through the Scottish Parliament at present because of the disastrous effect of levothyroxine in this patient who has recovered her health with the above NDT. That's not to say everyone will do well but at least, the very least, they can trial you with the product.

    Give your Endocrinologist a copy of the following. It's not only you who doesn't recover their health fully. Why have we got more than 20,000 mainly women on this site. Is it because they are happy and healthy on levothyroxine or are they still unwell. Some of them for 20 years or so - what a waste of years. Believe me, if these Endocrinologists could suffer - even for one week - try to do their normal jobs and live a life, the regulations would be changed Immediately.

    thyroidnation.com/fighting-...

    and send this too

    scottish.parliament.uk/gett...

  • P.S. with hypothyroidism and stomach problems it is usually due to low stomach acid which is the cause. This is an explanation. I doubt anyone who deals with hypo patients are aware of the clinical symptoms or problems which can arise. Many are prescribed other medications for their continuing symptoms which don't resolve the issues.

    sott.net/article/265343-The...

  • Hi shawls thanks for ure reply.. My last endoscopy show I had gastritis, esopheal histis, recent stomach bleeding and hiatis hernia.. Loads of tests done but they had no idea of what's causing it.. I have read about 2 little acid before and have tried cutting anti acids to one a day but like yesterday I started to get burning stomach and nausea so took my normal dose. At the moment my stomach is grumbly for England, so loud.. My body has like rippling tremours going on all over the place.. My skin is hot but I feel cold .. Pains in lower back .. Burry vision and anxiety big time.. Also the back of my neck is burning.. I am really at a loss what to do

    Fionna

  • If you've been taking antacids I believe it is necessary to reduce very, very gradually. I have also read of some members having 'tremours' too but don't know what causes this. Your symptoms sound awful.

    I am not telling you to change anything you're doing but the GP gave me antacids when I complained, I only took a couple of doses and stomach was worse. I am fine now since I switched to Betaine/Pepsin tablets which provide acid in my stomach and it dissolves the protein when I eat.

    You have awful symptoms and I don't for one minute believe that patients cannot have a bad effect with levo. I did and am on T3 only now and am well.

    Re high/low acid the symptoms are so very similar.

  • For help with treating your stomach, perhaps these links will help :

    scdlifestyle.com/2012/06/hy...

    scdlifestyle.com/2012/03/3-...

    scdlifestyle.com/2012/03/ho...

    scdlifestyle.com/2013/10/4-...

    Another good set of articles is by Chris Kresser - he explains why the problems arise in the first place :

    1) chriskresser.com/what-every...

    2) chriskresser.com/the-hidden...

    3) chriskresser.com/more-evide...

    4) chriskresser.com/how-your-a...

    5) chriskresser.com/how-your-a...

    6) chriskresser.com/get-rid-of...

    I've made big improvements in my gut taking probiotics twice a day, and I also take these :

    Digestive enzymes : questexcellence.com/details...

    Betaine + Pepsin : solgar.co.uk/SolgarProducts...

    However, since you've had gut bleeding, you might do better with digestive bitters which are mentioned in the 4th link I gave from scdlifestyle. I've never tried them though, so can't comment on them.

  • Since your T4 has jumped sky high on occasion, I wouldn't be surprised if you had very high reverse T3. Have you ever considered trying T3 only, and taking an antihistamine an hour before each tablet?

  • Hi humanbean

    You hit the nail on the head.. I have been told so many times to stop trying to find a logical reason or even an answer.. I have tried t3 on a few occasions.

    First time an Endo only reduced levo a little bit.. I was then on 100 and 125 on alternate days. She reduced it only to 100 a day and added 20mcg of t3.. The first few days hair loss was less and feeling a bit better but as the week went I suddenly went downhill.. Hair was like straw and face wrinkled so bad and the bad kidney pain .. In hindsight it was too higger dose..

    2 nd. time was when I was on injections.. Stopped injections on the Friday and then start t3 only the Monday i think it was a bout 30mcg a day. By about Wednesday I was in agony all over the place breathless etc etc.. Went back the Thursday they took blood and gave me an injection of about 200 t4 before even checking the blood result.. Well that result turned out t4 very high at 34 tsh 0.01. So u can imagine how I was feeling then having 300 of t4 put on top of that.. But no one ever looks into it and I stayed on injections.

    I have asked to try again but he wants me to stay on t4 for another 2 months before he will try..

  • Ps thank u for the links :o)

  • Fionna, I was recovering on T3 post TT and switched to Levothyroxine after RAI and my health went down hill until I was mostly bedbound. I improved when taken off T4 for follow up RAI and became unwell when back on it so suspected T4 was the reason for my illness. I was told for 15 months that Levothyroxine couldn't possibly cause the symptoms I experienced. I stopped T4 for 10/12 weeks to clear the build up but had palpitations within hours of resuming it and was breathless on the 2nd day. As soon as I added T3 the symptoms calmed down and I'm ok on T4+T3 now.

    100 + 20mcg T3 was obviously too much for you but it is easy to halve a 20mcg tablet or 5mcg T3 can be prescribed on a named patient basis and imported. Boots can supply Paddocks 5mcg T3.

  • Thank you clutter

    I will keep pushing the Endo.. Been in bed all day due to nausea and stomach pain. been drifting in and out of slee. Unfortunately at these times am just hopeless.

    I am sure the levo has a lot to do with my stomach problems.. I just hope 2morrow the nausea eases .

    Wishing u well

    Fionna

  • Are they really so stupid they cannot understand that lowering the T4 will also lower the T3? They have now lowered it so far that your T3 is too low for you to feel well (assuming that the range isn't something outlandish. Always ask for the ranges with your results.)

    You Don't react well to T4, and you are not converting well to T3. I couldn't say whether or not you are converting to rT3, but the obvious solution to your problems is to go T3 only. Whether or not we actually need T4, there are a lot of people - myself included - who do pretty well on T3 only. Ohhh, these endos! I'd like to slap their silly faces!

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