Feeling rotten Advice appreciated

Hi All

I seem to be feeling worse not better and getting a bit concerned.

Its been a bit of a roller coaster meds wise this last few weeks. Approximately 7 weeks ago my chemist randomly changed my levo from actavis to teva. The teva made me really quite poorly, bad joint pain & fatigue, bad anxiety and mood swings & depression. Oh and glow-in-the-dark yellow wee ? After being on the teva for about 10-12 days I had a gp standard test.

Results from Oct 16 ( On 125mg )

TSH 5.9 0.35-5.5

T4 13.4. 10-20

Recent results

TSH 0.4 0.35-5.9 ( they've changed the range )

T4 14.1. 10-20

Ive been on 125mg for 5 years and prior too that 150mg for 25 years. I've never felt right but since having my dose reduced felt a lot more symptomatically. After my recent results my clever doc, without consultation, reduced me to 100mg. Within a week I felt terrible again.

I ordered some t3 about 12 weeks ago. Then after lots of reading and advice from here realised I really needed to get tests done first. My blue horizon plus 11 arrived about 3 weeks ago. I've had very good advice to not get the bloods done for 6 weeks after the teva fiasco. So up until my doc dropped my levo dose I'd been good and not touched my t3

With no prospect of an appointment with doc for 3 weeks ( on hols again ) I was too worried that if I carried on taking 125mg of levo I'd run out and they would give me any more. So ive been taking 6.25 t3 with 100mg levo for 2 weeks.

I guess I'm worried I'm not tolerating t3 ? I've been feeling increasingly rotten, but under medicated rotten. Although my head feels very strange, brain fog has gone to a pea souper and it feels swimy ? I cant really describe how my head feels, but it's not nice & worrying.

Feel tempted to get my bloods done ? Is it to soon to up the t3, its been 2 weeks ? I know it is really too soon, especially before getting my bloods done. I guess I just need more levo ?

Sorry SeasideSusie if its basically the same answers you gave me 2 weeks ago - ie be patient. Not great at that 😞

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16 Replies

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  • If you are going to take a levo plus T4 combination I have read that it shoud be a 3:1 basis (T4/T3). If you've been on levo so long and have never felt well, I'd recommend (if Combination doesn't improve your situation) to try T3 only.

    tpauk.com/images/docs/reduc...

    Go to page 80 and left-hand top para.

  • Hi - it may not be just about being patient. Taking t3 will increase the strain on your system if you are deficient in any of the nutrients important for thyroid - vit d, vit b12, folate and ferritin. Any deficiencies will be effectively magnified - have you ever had these tested?

  • No I haven't, part why I'm chomping at the bit to get my bloods done. I've been taking vit b complex since January and b12 methylcoibalamin 1000mcg for a week. Ive got some vit d3 1000IU but didn't want to start those until I've got blood results. I doubt I'm iron deficient ( not had periods for 15 years - hysterectomy ) and have a good diet. But guess I could be a bit low.

  • It wasn't a very good idea to start the B12 and B complex without getting tested first. Now, you'll have to stop it again for five months before you can get a true result - unless you get an active B12 test - the serum test will be skewed. How long have you been on the 100 mcg levo? There's very little point in testing until you've been on it for six weeks. :)

  • Hi greygoose

    I've been on 100mg for 3 weeks & 4 days. And on t3 for 2 weeks. When I asked for an emergency script to replace the teva ( on teva for just over 3 weeks @ 125mg ) my doc had reduced it due to the blood tests 😠

    I started on the b complex in January long before finding out about t3, this site, supp!ementing for my thyroid health and private testing. And started on the vit b 12 recently to help out with the t3 ( and t4 ) and the way I felt. I appreciate what you say regarding it would be better to know my basic levels without supplementation. I guess I'm just in a rush to feel better 😞.

  • Yes, that's a terrible thing. It can set you back years. The thing is, if you don't test, you don't a) know if you need it, and b) if you do need it, you don't know how much.

    Plus, had your B12 been very, very low, you should have been tested for Pernicious Anemia - which means B12 shots for life on the NHS. But, given how reluctant doctors are to test, it's doubtful if he would not, because - whatever your result was without supplementation - now you are supplementing, it will be higher. So, less chance of getting a test. If you see what I mean.

  • Kitti1 It's all a flipping roller coaster isn't it?

    On 125mcg Levo your results were

    TSH 5.9 0.35-5.5

    T4 13.4. 10-20

    With your recent results of

    TSH 0.4 0.35-5.9 ( they've changed the range )

    T4 14.1. 10-20

    what was your dose?

    I can't quite work out if you were on 100mcg Levo then or your GP reduced you to 100mcg after seeing those results. And are you still on Teva?

    By the way, are you taking a B Complex? If so that is causing the glow in the dark yellow wee. It's the B2, Riboflavin, and normal. When I used Thorne Basic B my wee was very bright yellow, I now use Metabolics B Complex and it isn't so bright but the amount of B2 is the same.

  • That's a massive relief re vit b & wee colour. I've been taking H & B b complex since January and just must have not noticed the wee colour.

    The second set of tests were on 125mg and he's dropped the dose after seeing those results. I can only think the change was so significant because of the teva. No I stopped taking the teva just over 3 weeks ago.

  • Kitti1 So with these results

    TSH 0.4 0.35-5.9

    T4 14.1. 10-20

    your stupid d******d of a doctor reduced your Levo. FGS why???!!! Your TSH is in range (just) and your FT4 is only 41% through it's range.

    Sorry if you've already been given this information, I haven't read your previous posts (not too good with a lung infection at the moment πŸ˜₯ )

    *On soapbox* (trying hard not to be angry)

    You now need to get assertive and challenge any reduction with results like these.

    From ThyroidUK's main website > About the Thyroid > Hypothyroidism > Treatment Options:

    "According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

    That booklet is available on Amazon for about Β£4.95 and I suggest you buy it, find and mark the relevant part and shove it under your GP's nose. I don't see how he can argue with a book published by the British Medical Association for patients.

    That book is written by Dr Anthony Toft, who is past president of the British Thyroid Association and leading endocrinologist.

    Also -

    " Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk

    So something else to discuss with your GP. If he insists on reducing your dose, then insist he proves you are over medicated by getting your FT3 tested first, and if your FT3 is in range then you don't reduce your dose.

    *Off soapbox*

    Reading your reply to Startagaingirl, I was well past menopause, maybe by 10+ years but I was still at the bottom of the range for ferritin.

    I would want to see new results with FT3 included before suggesting what to do about your Levo and T3 doses.

    You really do need all those vits and mins tested and get them all to optimal levels so that any thyroid hormone can do it's work properly. Also there are a few general supplements that help us Hypos so have a think about these

    Vit C - plenty of it, at least 2000mg daily in divided doses, more to bowel tolerance if you wish. Vit C supports adrenals.

    B Complex (which I know you already take)

    Selenium (L-selenomethionine) aids conversion of T4 to T3 (and helps reduce any antibodies in Hashimoto's)

    Most of us are low in magnesium

    Mineral Complex but avoiding iron (because it cancels the effect of anything else in the complex), iodine, calcium.

    Co-enzyme Q10

    Probiotics

  • Thank you SeasideSusie

    I know I was fuming when i discovered he'd dropped my dose. At first I thought they'd made a mistake and forgotten to send over the request for the 25mg tablets when the script for my 100's went over. After a bit of messing about and confusion i was finally told he'd dropped my dose ! The guy hasn't got a clue !

    To make things worse when I knew my bloods were due back I phoned for an appointment. A 3 & 1/2 week wait to see him ! I moved house months ago and have been meaning to change docs for a while. So after the dose drop I thought need new doc. I registered nearly 2 weeks ago and was told my old surgery had a 28 day duty of care to me. I phoned on Thursday ( my old surgery ) to check the time of my appointment which was for tomorrow and was told it had been cancelled ! ! I was fuming ! I've got lots of articles & info printed off for him to educate himself with and was going to give him a piece of my mind. First doctor rule - do no harm. Well he is doing harm reducing my dose like that ! I had a right go at the receptionist telling her how ill he'd made me 😀😀. So I'll do him a letter to go with the info pack and hope he'll read it.

    Thank you for the extra info on nutrients. I thought I'd adress the basic ones first then work up to others like vit c and magnesium ect. Interesting to know about your iron levels well into menopause. So I guess that's one to look out for in the tests.

    I've been thinking about pro biotics especially with being ceoliac. I am extremely careful with my diet re gluten free as the slightest crump sets me off terribly. I do have probiotics yohgarts a few times a week but a proper pro biotic will probably help. πŸ‘

  • I remember reading one of the b vitamins affects thyroid tests but I can't find the information so I am starting to think I am crazy. It lowered TSH I think. Damn can't remember but wanted to say as you are taking complex B maybe you should take a break before next test?

  • Hi @justina ( it won't work with your name ? ?

    Thank you for that I'll bear it in mind and look into it.

    Hope your good πŸ‘

  • There are two i's πŸ™‚ and it's Biotin that skews the results

  • I must need better glasses ! πŸ˜€

  • Biotin is the one that possibly interferes with TSH result I believe?

  • Yeah that was it, just found it. I figured I was going crazy!!! endocrinenews.endocrine.org...

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