Newbie with raised antibodies on 50mcg levothyroxine

Hello :) I am looking for advice about my symptoms please. I was diagnosed hypothyroid 3 years ago, currently taking 50mcg levothyroxine due to symptoms my endo believes are hyperthyroid. Could anyone please confirm if she is right to do this or is there something else going on? I used to be on as much as 150mcg levo with 10mcg T3 added in.

Symptoms - lump in throat, difficulty swallowing, dry skin, puffy eyes and feet, weight loss, constipation, aches and pains, sugar and salt cravings, hair loss, tremor, weak muscles, heavy periods, sweating, tiredness, insomnia. These symptoms are very changeable as each day comes. No idea why.

Thankyou

*TPO antibodies - 275 IU/mL (<34 IU/mL)

*TG antibodies - 244.3 IU/mL (<115 IU/mL)

TSH - 3.50 mIU/L (0.27 - 4.20 mIU/L)

Free T4 - 14.7 pmol/L (12.00 - 22.00 pmol/L)

Free T3 - 4.2 pmol/L (3.10 - 6.80 pmol/L)

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17 Replies

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  • It looks like your endo may have reduced your meds too much and/or too quickly. Do you know what your results were like when she decided to reduce your dose?

    There's no reason for your tsh to be so high and t3/t4 to be so miserably low. No wonder you don't feel well.

    How did you feel on the higher dose?

  • Thanks. Yes I have results on the higher dose:

    October 2016

    TSH - <0.02 mIU/L (0.27 - 4.20 mIU/L)

    Free T4 - 20.8 pmol/L (12.00 - 22.00 pmol/L)

    Free T3 - 5.1 pmol/L (3.10 - 6.80 pmol/L)

    November 2016

    TSH - 0.05 mIU/L (0.27 - 4.20 mIU/L)

    Free T4 - 19.3 pmol/L (12.00 - 22.00 pmol/L)

    Free T3 - 4.8 pmol/L (3.10 - 6.80 pmol/L)

    Then she decided to reduce the medication.

    I didn't feel any improvement and at times I felt more hypo. Some new symptoms crept in - watery eyes was one of them but my eyes are super sensitive to the wind/sun anyway.

    The endo said it would take several months for my symptoms to catch up with my biochemistry but she reduced my dose before I felt any noticeable difference because of the suppressed TSH. Now that I have hyper symptoms like the sweating and weight loss this is what is putting off any further dose increases.

    I have had more hyper symptoms appearing than hypo ones since the dose reduction but I have had hyper symptoms even when undermedicated so I have no idea what I should be doing right now. Do I adjust without the endo's input?

  • Hi Lissa2,

    It certainly looks to me like your numbers were much better on your previous dose and you are currently badly under-medicated. It would appear that she has made the same mistake quoted by a lot of people of reducing dose based on a very low TSH. I would hazard a guess that the changeable nature of your symptoms is actually down to the swings of your Hashimotos - did you realise you had that? are you doing anything to try to reduce these swings? for instance gluten free, selenium supplements? Have you had your nutrients - folate, ferritin B12, vit D tested? If you have the results of those might be useful in identifying any other issues - but all your symptoms sound like hypo, even though some of these can also sometimes be associated with hyper/over-medication.

    Gillian

  • Thanks, I didn't realise I had Hashimotos. Results of ferritin, folate, vitamin B12 and vitamin D are below.

    *Ferritin - 11 ug/L (15 - 150 ug/L)

    *Folate - 3.1 ug/L (4.6 - 18.7 ug/L)

    Vitamin B12 - 197 pg/L (180 - 900 pg/L)

    Total vitamin D - 29.5 nmol/L (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated)

  • Yes the TPo and TG antibodies both being high show you do have Hashis (as do I btw). There are many experts here who I am sure will be along to give you full advice on it, but that generally would include a strictly gluten free diet and 200/day of selenium supplement.

    Your nutrients are all far too low for optimum thyroid performance and supplementing all of these should help with a lot of your issues. Ferritin needs to be at least 70, folate should be mid-range so around 12, B12 is best around 1000 and < 500 can cause serious neurological symptoms, vit D should be >100. Just within range on any of these is less than optimum for thyroid, despite what doctors will say! It is common for all these to be low in hypo/hashis due to malabsorption from gut issues and/or low stomach acid.

    I won't quote which supplements you should take as there can be issues with confusion in tests for reasons for B12 deficiency, toxicity of some vits etc. I would rather leave that to those with more experience than me in case I accidentally give you duff info and that could be unhelpful/maybe dangerous.

    There are plenty of experts here who will help more, but be assured there are ways for you to feel much better if you are prepared to take control and work it yourself.

    Good luck,

    Gillian xx

  • Your endo doesn't even know the basics of thyroid, does she! She is a public danger. Your symptoms are not, in any way, hyper - where did you get the idea they were? They are a mixture of low T3, low nutrients and possibly low cortisol.

    Dosing the patient just on the TSH, is a sure way of keeping the patient sick. The important number is the FT3. Once you are on thyroid hormone replacement, the TSH is irrelevant, unless it goes high - and it doesn't look like yours is going to! But, it doesn't matter how low it goes. In fact, as you have Hashi's, you actually need it suppressed.

    Your nutrients are all too low, and need supplementing - they are low enough to make you feel ill.

    Ferritin is below range - what is wonder-woman doing about that? - when it should be at least mid-range.

    Vit d should be up around 100 - you need to supplement with vit D3, and vit K2.

    Folate should be at least mid-range, and B12 at least 500. In fact, B12 is so low, you should be tested for Pernicious Anemia and get free B12 shots for the rest of your life. Failing that, you should be supplementing with 5000 mcg sublingual methylcobalamin daily - take that for a few months, then drop to 1000 mcg.

    With that, and also with B12 shots, if you get those, you should be taking a B complex containing at least 400 mcg methylfolate, to bring your folate up. But, do try to get tested for Pernicious Anemia, won't you. Poor thing, you must be feeling absolutely dreadful! That endo should be put up against a wall and shot! :(

  • Thanks, the endo said the symptoms like the sweating, weight loss etc are hyperthyroid ones. She said they were in no way connected to low thyroid. As for ferritin my GP flagged that up as low as well as a low MCV - my endo said neither of those point to an anaemia. TSH has been much higher in the past though not since Feb/March.

  • If your endo knew anything about thyroid, she would know that a lot of symptoms can be both hypo and hyper. But, you have to go with the majority. If you have 20 hypo symptoms, one hyper symptom is not going to make you hyper. It is possible to have both at the same time. She should not have reduced your dose like that.

    And your low ferritin may not point to anemia, but that doesn't mean you don't need to raise the level, because you do. Low iron - whether anemia or not - will mean that your body cannot use the thyroid hormone you are giving it.

  • Keep in mind that low nutritionals can be due to gut damage. The O'Bryan video will give you info on this.

  • Please post those results on the pernicious Anaemia forum on health unlocked. With those results you realy need advice before doing anything yourself .....

  • Go to your GP and ask for full testing for Pernicious Anaemia. Ask on PAhealth unlocked for full advice on which tests you need

    You should only add one supplement at a time.

    Going gluten free really can help.

    Selenium supplements can help improve symptoms and reduce antibodies.

    Suggest you read as much as possible about Hashimoto's

    The Thyroid Pharmacist

    chriskresser.com/the-gluten...

    Amy Myers

    The immune recovery plan by Susan Blum

  • Some people get sweating and weight loss if they are undermedicated. Everyone is different. Fast pulse is a better indication of being over medicated than sweating and weight loss. Insomnia can definitely be hypo or hyper. Constipation and heavy periods are usually hypo.

    A TSH of 3.5 is definitely undermedicated. If you have been having heavy periods for any length of time you may be low on iron/ferritin and should get checked and supplement if necessary.

  • Thanks, I have low ferritin and low MCV. GP has flagged this up. Endo says this is not a concern.

  • Low iron is always a concern. (Ferritin is a measure of your iron stores.) It makes people feel dreadful! It can also cause chest pain, tachycardia (inappropriate fast heart rate), irregular heart beat, palpitations, dreadful fatigue, brain fog, ...

    With your low ferritin you should really be given iron infusions. I doubt if you will get them though if your useless and sadistic endo has anything to do with it, but your GP may agree if you ask. Iron infusions will raise your iron levels very quickly.

    However, if you can't get infusions you'll have to raise your levels the slow way, with supplements you buy yourself. You should be aiming to get your ferritin to mid-range.

    People absorb iron at different speeds. Some will raise a low level within 6 months. I took nearly two years to get my ferritin to optimal. During this time I was paying for my own testing to check on all the iron-related measures I could, but your doctor may test for you.

    If you search this forum for ferrous fumarate, ferrous bisglycinate, "Gentle Iron", ferrous gluconate you'll find info on where to buy them and the appropriate dosing, and what to test for.

    Good luck.

  • The AACE TSH range is 0.3-3.0. Functional medicine practitioners like to see TSH in the range 1-2. Obviously your endo is old school, she is not up to date.

  • You could take 210mg Ferrous fumarate with some vitamin C each day. It can take a long time to get ferritin levels up. My daughters struggle with low iron and they found they could take that much ferrous fumarate 3 times a day if necessary. It depends how well you tolerate it. They didn't tolerate ferrous suphate well at all (which is what doctors often prescribe because it's cheap).

    Being low on iron can make you tired, breathless and generally low. It also makes periods heavier. Many people on this forum would say that without healthy levels of ferritin, vitamin B12 and Vitamin D your body is unable to make best use of the Levothyroxin you take.

  • You are undertreated. You need your FT3 to be in the upper half of its range. Your nutritionals are not good. On top of that, your endo does not know how to look for the source of your autoimmunity (other than to give you T4). As I usually do in cases like this, begin your investigation of autoimmunity by going to Youtube and viewing Tom O'Bryan's video on The Autoimmune Fix. Autoimmunity is often an environmental problem related to dangerous foods, and/or environmental pollutants like heavy metals.

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