Thyroid UK
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I feel so unwell

I haven’t posted for a while as I had been feeling much better....now I am feeling really unwell again. I had a total thyroidectomy after a thyroid storm 18 months ago. I was started on 100mcg of Levothyroxine after leaving hospital which was reduced to 75mcg on seeing the Endocrinologist.....since then I have been up and down between 100mcg & 75mcg....I had been feeling more ‘normal’ during the summer, although have always been tired and lethargic...at my last blood test I was taking 100mcg 5 days a week and 75mcg 2 days a week...I felt ok on this apart from the lethargy and tiredness which never seems to go away! The results of this test 28 Sept were:

TSH * 0.11 mU/L 0.3 - 4.2

Free Thyroxine * 25 pmol-L 12 - 22

Free T3 4.6 pmol/L 3.1 - 6.8

My GP reduced my Levothyroxine to 100mcg 4 days a week & 75mcg 3 days a week from these results. For the last two weeks I have been feeling really ill again. I feel sick, I can’t eat I have had pains in my chest (I have had test done for my heart and they are all ok), I feel weak & light headed, I have palpitations for which I take propranolol 20mg twice a day, I also take an anticoagulant prescribed by the cardiologist last year. I have read on this site that selenium is good so I take 100 mcg daily. I am so fed up with feeling like this. I am due for another blood test after Christmas and am hoping for an increase in dose as I am sure I feel better on a higher dose, even if my TSH is too low & T4 too high...I even thought I might just increase it myself, but wanted to have a blood test first & not risk the results being high again....

Sorry for being such a moaner but am so fed up as I really thought this Christmas I would be feeling much better.....

Any suggestions from you very understanding people...

20 Replies
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Foxie

Your FT3 is far too low. T3 is the active hormone, most of us feel best when FT3 is in the upper part of it's range. You need T3 added to a slightly lower dose of Levo. Your GP can't prescribe it initially, it needs to be prescribed by an endo. You could ask your GP for a referral, email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos then ask on the forum for feedback before any you can get to. ThyroidUK's office is closed until 3 January.

Alternatively you can self source and self medicate T3 to add to your Levo, members experienced in using Levo/T3 combination can help.

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On the day you have your blood tests, do you take your levothyroxine beforehand?

If you’re taking it beforehand, it may be making your FT4 reading higher than it actually is...

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Hi

Thanks for your reply...I have my blood test as early as I can approx 8.00am/8.30am. I fast before and take my Levo after the blood test as suggested on this site,

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Oh good - just checking. Then as others have said - it’s a conversion problem by the looks of things. You’d benefit most likely from having liothyronine added to your levo dose.

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Foxie, you're taking propranolol and the cardiologist told me that taking betablockers prevents the conversion of T4 to T3. Perhaps you have a heart condition and need them but you should check it out with your cardiologist if you have not already done so. You can get palpitations from not enough T3 because your heart needs it. If you do not have a heart condition I'm wondering why you are taking betablockers when you are hypothyroid? Could you consult with the cardiologist?

In a previous post, Clutter suggested you post your vitamin levels, B12, folate, ferritin and Vitamin D. If you have not had these tested I suggest you ask your GP to do them. It's very likely you have some deficiencies which are common in people with thyroid disease. This can contribute to thyroid hormone not working as effectively as it should.

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Hi thanks for your reply.

I take propranolol for AF, which I have after the Thyroid storm. The cardiologist knows I am on Levo as he is the same one I had in hospital last year when I had my thyroidectomy. He actually increased my dose as I had been trying to reduce it as I had read on this site that it may not be good with Levo, however, I have been on it for the last 18months and some of that time I have felt ok.

I have posted all results when they were last taken, which was March 2017.

Vit B12 341 ng/L 190 - 800

SERUM / PLASMA FOLATE

Folate >24.0 ug/L 3.9 - 14

FERRITIN

Ferritin 33 ug/L 13 - 150

VITAMIN D

25 Hydroxyvitamin D 89 51 - 250 nmo1/L Adequate

Hope this is ok.

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Foxie

Your B12 is too low. Very top of the range is recommended, even, 1000 - an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Ferritin needs to be at least 70 for thyroid hormone to work, recommended is half way through it's range so you need to improve yours. You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

Also, Vit D needs to be 100-150nmol/L according to the Vit D Council so you should be supplementing with something like 4000iu daily throughout the winter months then retest in March/April. When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk

There are important cofactors needed when taking D3 vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...

Check out the other cofactors too.

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Have you been supplementing for any of your low vitamin levels and have you had them retested since last March? It's quite a long time ago and some are low in range. Thyroid hormone will struggle to work efficiently with low in range ferritin, for example.

Although vitamin B12 is in range, I think the Pernicious Anaemia society advocate a B12 level above 500 to ensure sufficiency but you could check with Healthunlocked Pernicious Anaemia forum as they are the experts in B12 and folate. healthunlocked.com/pasoc

Ask for referral to Endo as SeasideSusie suggests and discuss your low FT3 with the cardiologist.

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I've just read through some of your previous posts and some of your symptoms could be low B12. Good advice from Susie.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 Guidelines doctors follow

onlinelibrary.wiley.com/doi...

Did your doctor rule out pernicious anaemia, B12 deficiency or other vitamin deficiencies before prescribing other meds? Sounds like you've had a really bad time.

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Thank you so much for replying, I don’t know what I would do without this site, I read it every day even when I feel ok. The advise is so good and everyone is so caring. No doctors have ever mentioned vit b deficiency, only been told, as per the course, that results are within range! I had a very high dose of vit D while in hospital for 6 weeks and have taken 800 each day but stopped in July last year, I am due to be tested again this month.

I am a bit reluctant to take loads of medication as I had to take so much when I was in hospital, I am trying really hard to reduce the amount of tablets that I take.....but if you think I need to take more vits then I will. Regarding the vit D and taking K2 with it, I am worried about any K vits as I take anticoagulants and I think you have to be careful of K vits....?

I will talk to my GP and try and get a referral, but do t hold your breath!!

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Yes, you're sensible to be careful with anticoagulants and vitamin K's but it's something you could check out with the cardiologist. You might find if you get your vitamin deficiencies sorted out then the atrial fib will improve.

The point of improving vitamin levels is so that you can avoid taking other medicines. If our nutritional needs are not met then we develop symptoms and illness and doctors prescribe all sorts of medicines that may have horrible side effects without investigating nutritional deficiency because they have not been trained to do so.

A lot of people on this forum have been offered anti-depressants for a range of symptoms and then when people here told them to get vitamin levels tested it turned out they were low or even severely deficient. They could have ended up on anti-depressants and simply got more ill. Doctors then just tell people all their ensuing symptoms are down to their anxiety condition and fail to investigate anything any more.

It's common for people with thyroid disease to be deficient or low in vitamins because thyroid disease and antibodies can affect the gut and cause absorption problems so that no matter how well people eat, they simply don't absorp the vitamins from food very well.

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Foxie

I did a bit of reading regarding Vit K2 a while ago which you might find interesting, it threw up some interesting articles and it might be an idea for you to look further into it.

healthunlocked.com/thyroidu...

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Foxie1234 you might be right about feeling better when your TSH is too low and FT4 is too high - read this by Professor Toft, something to discuss with GP or Endo?

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

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Your very likely under medicated, and this causes low vitamins

Low vitamins are one reason your have poor conversion.

Improving these may/should improve conversion and is first step anyway.

But many need addition of small dose of T3, but vitamins must be good first

See this recent article by Prof Toft, he is now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

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Your Ferritin - or stored iron is low so your GP should do a full Iron Profile and Full Blood Count to check levels in the blood. Oxygen is carried around the body by sticking onto the iron in a red blood cell - so when the iron is low - so is the oxygen. The heart detects this lower level of oxygen and beats faster in an effort to produce more oxygen. Low Iron = Low Oxygen. These basics are often overlooked in the rush for the prescription pad 😊

I also agree with Low T3 being a huge effect on the heart. When I needed my next dose my heart would flutter. Check out the book on Amazon - Thyroid and Heart Failure - T3 or Liothyronine mentioned time and time again !! Our muscles need T3 - the heart is another muscle.

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Propranolol also tends to lower magnesium and we hypos tend to be low in magnesium anyway.

Magnesium is important in controlling heart

Magnesium is essential mineral and also is cofactor for vitamin D

naturopathconnect.com/artic...

hypothyroidmom.com/two-vita...

magnesiumeducation.com/how-...

integratedhealthblog.com/ma...

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As Nanadake already said Proponol Interferes with the converion of T4 to T3. T3 is the usuable form of a thyroid hormone, T4 is the storage. The proponolol is causing your T4 to back stack as it cant convert as well, hence the high level ft4 result & low ft3.

This happened to me once. I was put on a high slow release dose of proponolol. I became exceedingly ill after a few weeks. Blood pressure shot up. My endocinologist doctor told them to take me off it and to stop all thyroid meds for a week. This is because when you stop taking the proponlol the body starts to convert the thyroid meds once again. This can cause a thyoid storm. You will need careful monitoring fir the first few days.

Please see your GP as a matter of urgency & contact your cardiologist. Proponolol should not be mixed with thyroid meds. There are other beta blockers that are fine that do not do this. I am on cardivilol which does not stop thyroid hormone conversion.

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Oh my God I get so angry when I hear people suffering like you are. I had total thyroidectomy last January was on 150 levo and was so sick with all your symptoms. I found a good endo I refuse to deal with my gp as I have learned they only look at tsh!!!

I am now on t3 and t4 and am getting my life back, you have no thyroid fight for t3.

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Thank you Johnjoe for your reply....I too think I have suffered for long enough. I am having my blood test next week and will take things from there. My husband is thoroughly fed up with me being ill and medical profession not listening. If it wasn’t for him last year, when I had a thyroid storm I would not be here now....sometimes he can be a bit awkward with the medics, but then sometimes it is needed.....I think I will look for a good Endo (I had one last year but he is now not in my area) I will take my husband with me as they may just listen to him again!!

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Keep fighting for proper treatment. T4/t3_ natural hormone like armour. T4 alone is in my opinion is not OK for us without thyroid. No gluten balance vit minerals.

Stay strong you have to be your own advocate.

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