Hypo symptoms, blood results and self medication - Thyroid UK

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Hypo symptoms, blood results and self medication

davidco profile image
8 Replies

Hi everybody, I'm new here. I've been reading accounts of struggle with incompetent doctors from other forum users. Being a victim of one myself I've decided to ask about your opinion what should I do next.

I'm 34 male. Around 8 years ago from healthy and full of energy I've quickly turned into cold, depressed, very tired version of myself. I had muscles and joint pains and dry eyes and skin. Back then I had no idea (or ever head about such a thing), neither my GP have told me that I could have had thyroid issue. My patch of feeling really terrible improved somewhat after one year. Currently after fixing as many things as there are in my control (diet, sleep, removing stress, exercise) I feel overall better, yet I still have periods (usually weeks, sometimes months) of feeling completely drained of physical and mental energy and being 'brain fogged'. I struggle to have any energy for my family or for doing anything else then 9-5 job (that I'm lucky to do from home, commuting makes me very tired).

After one private consultancy (doctor opinion - depression ...), and NHS GP visit (after blood tests doctor said that if I don't get other symptoms she will not prescribe me T4 - I guess I need to loose my hair and gain weight first ?) I decided to help myself instead.

I've been experimenting now with some Iodine supplements (400mcg of Kelp tablets + selenium), and that seems to be helping slightly. I was thinking about experimenting with low dose of synthetic T4 as it seems that it's my FT4 that is on a lower side, not my FT3. Does it always makes sense to use Natural Desiccated Thyroid instead of Synthetic T4 ? I would be very grateful for your opinion on that matter.

My blood results from August:

TSH: *5.73 [ 0.27 - 4.20 ] (6.45 January)

FT3: 3.5 [ 2.0 - 4.4 ]

FT4: 1.05 [ 0.93 - 1.71 ]

TgAb: *478 [ 0.0 - 115.0 ]

TPOAb: 40.1 [ 0 - 60 ]

Vitamin B12: 1001 [ 191 - 663 ] (514 January)

Vitamin D: 52.3 ng/ml [ 30 - 100 ] (29.8 January)

Folic Acid: 16 ng/ml [ 5 - 19 ] (13 January)

Ferritin: 157 ng/ml [ 30 - 400 ] (175 January)

Transferrin: *2.12 g/l [ 2.15 - 3.65 ]

Serum Iron: 83 mcg/dl [ 60 - 170 ]

Rest of the blood test seemed fine, with Hemoglobin slightly under the normal range.

Many thanks.

PS. Observation - addition of chicken liver to my diet greatly increased amount of Vitamin B12 in my blood (From ~500 in January to ~1000 in August).

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8 Replies
fibrolinda profile image
fibrolinda

Iodine is not recommended when you have hashi's (unless test show deficiencies) which you have, did anyone tell you that? Autoimmune Thyroiditis more commonly known as Hashimotos.

With a TSH of 5.73 you are hypothyroid ..... grrrrr, guidelines in uk say wait till its 10, in many other countries you'd be put on meds when 3.

Could you maybe try another GP?

If you email louise.roberts@thyroiduk.org and ask her for a copy of the Pulse article by Dr TOFT and take it with you. I'm sorry I am very foggy headed this morning and cannot pull info from my brain but the article had info on when to medicate patients and I believe having Hashimoto's was one.

A gluten free diet is often talked about/advised on the forum for hashi's and worth looking into. I would certainly try your best to get treatment on NHS before going the self medication route ' easier and less stressful getting the medication you need' though I understand why you are thinking about it.

Look at our parent website thyroid uk and see just how many symptoms you already have.

Also maybe repost this saying its a repost help as it seems to have slipped through and hopefully peeps with working brains will respond.

Good luck

Linda

davidco profile image
davidco in reply to fibrolinda

Thank you for the advice Linda.

I'm gluten free for a year or so. I think I will attempt to experiment with self medicating myself (thyroid hormone that is, everybody here effectively discouraged me from iodine) for a while, and if that helps I will attempt to go through NHS / private GP route again.

moomoo17 profile image
moomoo17

you have hashimotos which is autoimmune thyroid disease, the antibodies and tsh fluctuate, bringing with it a fluctuating pattern of symptoms. This could explain the periods when your symptoms worsen. It is not a good idea to take iodine when you have hashimotos, certainly not kelp. You need to get a urinary iodine loading test to check for true deficiency, if in uk I think biolab do this. You could benefit from a trial of t4, you need to be firm with your request to your GP. From what I've read its not impossible to take iodinewith hashis bug it should be lugols not nascent, and sloy built with supporting nutrients like selenium. And only after a urine loading test, your levels may be fine. Regarding your b12 levels its common to have b12 deficiency with thyroid disease. The serum b12 is completely inaccurate although levels have risen, you may not be absorbing any of it. The symptoms you describe are also those of b12 deficiency. The serum b12 shows a total of b12 in your blood, it doesn't differentiate between what is inactive and active, meaning you still could well be deficient and feel symptoms. There are further tests needed but if youve taken any supplements or fortified foods containing b12 they could be inaccurate too, free from supplements for at least 4 months gives best chance of accuracy for some of the tests, others need 2 weeks off.

tests are active b12, intrinsic factor, mma, homocysteine, parietal cell antibodies, add in b6, and folate too. Please consider asking for a trial of b12 injections from your Dr.

hope that helps

thyroid problems are a maze of often hellish times, dont give up trying to feel better.

moomoo17 profile image
moomoo17 in reply to moomoo17

omg ive just seen your vitamin d result this is far too low, no wonder you feel awful. There is a good vitamin d and b12 group on facebook. To get your d up you need a soft gel olive oil based capsule, not what yourdr gives, and viamin k2, and magnesium, non soya or natto based k2 as you shouldn't have that when you have thyroid prblems. Bisglycinate is a good starting magnesium, not citrate, sone like mag malate for its energising effect, some take malate in the morning and glycinate in the evening, aim for vit d level above 100/125. You will feel much better.

davidco profile image
davidco in reply to moomoo17

Thank you for the answer.

About the Vitamin D level I think values that you mentioned are in nmol/l where I've specified mine in ng/ml. My results from August in nmol/l is 130 (from January 74). I'm taking extra Vitamin D whenever I'm not able to get outdoor much. That's really interesting about these different types of magnesium, so far I've been taking only citrate.

I will do this iodine load test that you suggested.

greygoose profile image
greygoose

Even if you are iodine deficient, raising iodine levels is not for amateurs. You need a trained specialist, otherwise you could make things ten times worse by just taking it yourself - especially as you have Hashi's. Taking kelp will just make your thyroid burn out sooner.

No, it doesn't always make sense to use NDT instead of synthetic T4. For a start, it's not all that natural. It still has to have fillers to make it into a pill, and it's the fillers that usually upset people, not the hormone itself. NDT doesn't suit everyone. Especially if they have Hashi's. Sometimes, believe it or not, synthetic is better. But, there's no way of knowing what sill suit you best without trying - it's all trial and error in this game! So, look at it from a different angle : what is easiest? Synthetic T4 is easiest, partly because your more likely to get it from a doctor than you are T3 or NDT, partly because it's easier to dose. So, that is a good first port of call. Try it for a few months - starting low - 50 mcg daily - and increasing slowly - 25 mcg every six weeks and retesting, until your symptoms are gone. If that doesn't help you at all, then there are other brands of levo to try. Then you could try adding in T3. If all else fails, try NDT - once again, there are several brands to try. And, if even NDT doesn't help, there's still synthetic T3 only. Speaking as someone who has been through all of the above, for me, synthetic is best! :)

PS do you have a good recipe for the chicken livers?

davidco profile image
davidco in reply to greygoose

Thank you greygoose, this is some great advice!

About the chicken liver, at the beginning I was treating it as a medicine (not a big fan!) and to be able to consume it I've been treating it with a liberal amount of curry spice mix.

After I got used to it I settled on a simple recipe of onions + Worcestershire sauce - geniuskitchen.com/recipe/it... Without flour that is.

greygoose profile image
greygoose in reply to davidco

Don't think I'd like curried liver. But that Italian recipe does look good! I might try that. :) Thank you.

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