Thyroxine troubles

Hi guys, I am new here.

I wonder if anyone can advise me. 2 months ago (to my shock!) I was diagnosed with hypothyroidism. Prior to that I felt very-very tired and lethargic, even in the mornings.

THS was 5.8 and T3 and T4 normal. Vitamin D levels low. TPO was 10 times higher than normal range, so they also diagnosed autoimmune thryroiditis. I was told I need to take liquid viamin D and thryroxine - possibly for life, starting from 50mcg. Almost immediately, after I started taking Thyroxine, I started feeling extremely bloated - painful abdomen and stomach. I gave up for a few days - felt a lot better. Then started again - pain returned. Some days it's so bad my life is not worth living. I even feel pain in my sleep and dream of it. Tried taking thyroxine on an empty stomach to begin with, then after food, then with food - no difference. Thyroxine did not make me more energetic, neither did it make any difference to my life so far - the only thing that is better: my face stopped swelling so much around the eyes. Anyone can help? I am at my wit's end(

If this information of any use, I have had two ulcers of the duodenum in the past and generally have week stomach.

18 Replies

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  • Welcome to our forum Yulia2010.

    Due to having high thyroid antibodies, your condition is the commonest for a dysfunction of the thyroid gland. It is called Hashimoto's. The antibodies wax and wane and sometimes they are too high and at other times too low until you become hypothyroid.

    By going gluten-free you can reduce the antibodies.

    Your dose is small at present as it is a starting dose. You should have had a blood test at six weeks or no later than 8 when first diagnosed.

    When your blood test is due it has to be the very earliest available and fasting although you can drink water.

    Also allow 24 hours gap between your last dose of levo and the test and take it afterwards. It is a fasting test (doctors unaware of this) but you can drink water.

    If GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these to be done as we can be deficient.

    Always get a print-out from the surgery with the ranges for your own records and so you can post if you have a query.

    Always take levo on an empty stomach with one full glass of water and wait about an hour before eating. Members usually take it when they get up but others find bedtime dosing suits them better. In that case you should have last eaten about 3 hours previously when having a test next day. You miss the night dose and take after blood test and again at night as usual.

    hypothyroidmom.com/when-the...

  • Many thanks for the reply. This information is very helpful.

  • I forgot to say a blood test every six weeks with an increase in levothyroxine until symptoms are relieved. The aim is a TSH of 1 or lower - not when it reaches the top of the range as most doctors wrongly believe.

  • Many thanks for the information. Is there any chance of thyroid restoring its function? I have heard of such stories but as I understand they are rare.

  • I couldn't answer your question but maybe this link will be helpful for you. An excerpt:

    Restoring underactive thyroid function to normal is no minor undertaking. To do so will require thorough investigation and effort by both patient and doctor. Before we get into our program for reviving the thyroid, let's first review some basics about the thyroid.

    drdebe.com/articles/revivin...

    I don't have any knowledge of drdebe.com

    Also I am not medically qualified. I had an undiagnosed/untreated hypothyroidism.

  • Never accept 'normal' as a response. It is an opinion, not a diagnosis. There is, in fact, no such thing as 'normal' when it comes to thyroid, because we are all so individual in our responses and needs. What a doctor means when he says 'normal' is 'in range'. But just being 'in range' is not good enough. It's where in the range the result falls that counts. if your TSH was 5.8, then your FT4 and FT3 were bound to be somewhere at the bottom of the range. Do you have the actual numbers, and the range?

    It's important to know these things, because doctors tend to only look at the TSH. And if they like the look of it, they pronounce you 'normal' - which is often far from the case.

    So, you started off on 50 mcg - which is a good starting dose, but is very unlikely to be your optimal dose, and probably won't make you feel any better at all. It all takes time. As shaws said, you should have another test 6 to 8 weeks after starting the levo, and an increase of 25 mcg. Do not let them leave you on a starter dose for too long, as that can be counter-productive.

    Several things can affect the way you absorb and utilise levo, one of them being low stomach acid. Hypos often have low stomach acid, and that will not only stop you absorbing the levo, but also nutrients. And, low nutrients mean that you will not be able to use the levo you're taking. You had low vit D, did you have anything else tested? If not, ask for vit B12, folate and ferritin tested, because they could be low too.

    To find out if you have low stomach acid, have a look here :

    drjockers.com/5-ways-to-tes...

    Scroll down to The Baking Soda Stomach Acid Test.

  • Many thanks for your reply. I was very lucky to be tested in Russia on a paid basis: I could have any tests I wanted for a very small cost (it's really cheap there). I have the results of all the tests with me - with explanations. T3 and T4 are really normal, which is why the diagnosis is subclinical form of hypothyroidism. Iron levels are OK, did not know about B12, though. Will get this tested, too, as well as folate.

    As a rule, I have high stomach acid, hence the constant problems with stomach(

    I am a bit worried about the potential harm thyroxine could be causing to stomach and gut. I've heard that it should not do this ("no side effects when taken properly"), yet many people complain of the same as me.

    I didn't take thyroxine today and feel no pain. Dread taking it again tomorrow morning(( Does anyone know if you can have it in patches or even injections?

  • I've never heard of anyone have thyroxine in injections or patches, but there is liquid thyroxine - at a price - which contains no fillers. And it's more than likely that it's the fillers that are causing the problems, not the thyroxine itself.

    Actually, that's not what sub-clinical means. Sub-clinical means that you have high TSH and low Frees, but no symptoms. You have symptoms, so, technically, it's not sub-clinical. But, you still haven't told me what the results are. lol Is it a secret? If you have symptoms, they obviously aren't 'normal' for you. It's low T3 that causes symptoms, not high TSH.

    Have you had your stomach acid tested, to know that it is high? Excuse all the questions, but we do see a lot of people that just accept what their doctors tell them, when their doctors are totally wrong!

  • Hi, you're absolutely right about people just accepting what doctors tell them. I didn't write the results straight away as I didn't have them at hand. Here is T4, which is 16.09 pmol/L, TPO is 363.50 and vitamin D is 19.60 ng/ml. I can't find my T3 test, though(( it was done separately. I also tested cholesterol and it was slightly raised, too( Total cholesterol 5.62mmol/L, ferrum was 18.30mcmol/L (last year I was anaemic due to prolonged bleeding).

    I tested my stomach and have to do so regularly as I am inclined to have ulcers and this can be a pain in the neck, taking long time to heal. So, endoscopy every 2 years and last was in November this year

  • The numbers mean nothing without the results. And an FT3 done separately is not a good guide to how well you are converting. The two Frees need to be tested at the same time to know that.

    Raised cholesterol is a hypo symptom. Your vit d and ferritin were very low. Are you supplementing iron? It would be a good idea to get your B12 tested, because low B12 can cause terrible symptoms - even neurological damage.

    I thought ulcers were due to low stomach acid, because the bacteria can't survive in high stomach acid.

  • Thanks! There tests were done by myself. Here I went to my GP and he sent me to do blood tests (I haven't been yet as waiting for 8 weeks on Levothyroxine).

    I will make sure to get tested for B12.

    Ulcers were originally due to stress and bad diet. Later, they discovered Helicobacter pilori which I found very difficult to get rid of. In the recent test they did not find it (thank God).

    With iron levels it's a very long story.

    Recently, I had endometrial ablation as my periods were very painful with occasional prolonged bleeding which I couldn't stop for weeks. After that, irons levels seem to be much improved. But I take ferrous sulphate from time to time, too.

  • Well, your UK GP won't test FT3, I don't suppose. Might not even do FT4. They don't tend to know much about thyroid.

    Your heavy, painful periods were no doubt due to your low thyroid and low iron.

  • The test I will be taking is for T3, T4 and TPO plus cholesterol. I actually have a good, sympathetic GP, although yes, he may not know so much about thyroid( I have read a few lovely books, though, on the topic (one being The great thyroid scandal by Dr Barry Durrant-Peatfield) and have already made some changes to my life which may also help (I hope!)

    It's great to know that there is a liquid form of Thyroxine. How expensive is it?

  • Sorry, meant to write T3, T4, THS and TPO - so, hopefully, when I have this test, everything will be covered for thyroid.

  • Well, I hope that the lab will do all those tests, but they often refuse, even if the doctor does ask for them.

  • Forgot to write about ionised calcium, my Russian endo thought that was relevant. Its concentration is 1.28mmol/L

  • Yes, very true...

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