Biting the bullet going to self treat!

So I'm going to try self treating to see if I feel any better.

I know a couple of you have already messaged me so thank you for that but would any of you that do self treat mind messaging me and advise where you buy your meds from. I'd rather use a pharmacy that people have experience with. Also my main problem seems to be very low normal ft4 and from what I've read most of the natural thyroid extracts seem to have a combination of both hormones. Does anyone know of any that just contain the one hormone? Sorry it's just it's all new to me and I don't really know where to start.

I have actually emailed my GP telling them that it is my intention to self treat and it said I will get a response on Monday. No doubt it will be a phone call asking me what I'm playing at but I said in my email that as their hands are tied and the NHS won't allow them to do anything I'm not prepared to carry on feeling rubbish and taking more and more pills for ailments , that I feel could be helped by sorting out my sluggish thyroid.

Thank you

34 Replies

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  • Munchlet Natural dessicated thyroid only comes as a combination of T4 and T3, generally 38mcg T4 plus 9mcg T3 stopthethyroidmadness.com/a... . There is no 'natural' one-hormone-only thyroid replacement.

    You can get synthetic T4 only which is Levothyroxine, synthetic T3 and there is a synthetic T4/T3 combo but I don't know anything about availability of that.

    What is it that you want?

  • Hi SeasideSusie thanks for the reply, at the moment my FT3 looks ok, it could probably do with being a bit higher but it's my FT4 that I'm concerned about as it's literally just in range 12.6 in a range of 12-22. I was thinking about taking something that just contained T4, unfortunately as my TSH is not quite 4 (it's 3.83) the NHS won't give me a trial of Levothyroxine so I was going to self treat. You'll have to excuse my ignorance as it's all new to me but I was thinking I just needed to take the one hormone as the other one looked ok but I wanted to get other peoples experiences. I know no one can tell me what to take etc as it's down to me but I think I'm so used to reading that the NHS prescribe the one hormone I assumed that's all I needed.

  • Well, you can buy Levothyroxine, like it's possible to buy T3. So if you wanted to go down that route you can, but it's the same stuff as GPs prescribed, you can't get any natural form of T4, just synthetic Levo.

    So when you speak to your GP and discuss self treating, you could mention that it is possible for you to obtain Levo but it would be preferable if he were to give you a three month trial on prescription. If he says you are within range, tell him that with your TSH so high in range, and your FT4 so low in range, coupled with your symptoms, it's quite obvious that you are well on your way to Hypothyroidism and that you would prefer to start a trial of Levo now rather than wait until you become so ill with disabling symptoms that are going to affect your life, your ability to work, and your relationship.

    Have you had your vitamins and minerals tested yet, as was suggested in previous threads? They really are very important and play a huge role in how thyroid hormone works, and that is our own as well as replacement hormone.

  • No I did ask my GP about vitamin/mineral tests but all she said was if I'm still feeling unwell in 6 months she will look at testing then when she does the TSH again!! I have to say I've already started supplementing with Vit D, K2 and added in some prebiotics. Haven't done anything with Iron as I know that can be dangerous and they've always said in previous tests my iron levels are very good. I am saving to get the Blue Horizons full vit check done had a lot of outgoings recently. I'm kicking myself as I had the Thyroid + 6 test done at Christmas and could have had the full lot done for a bit extra! I am going to discuss with my GP I've actually emailed my old GP (They changed fairly recently as my old one reduced his hours) , he tends to be a bit more receptive to prescribing and when I've been with him before with concerns he's always been really good and supportive. I like my new GP but she's very new and young and I get the impression she does everything by the book whereas my other one will probably ring me and say "what he hell are you doing" but he might actually agree to a trial, which is obviously what I'm hoping for!!

  • You really need to know your Vit D level before supplementing. D3 is fat soluble so any excess is stored and can cause toxicity if it builds up too much. You can get a fingerprick blood spot test from City Assays for £28 if that is all you want to test at the moment vitamindtest.org.uk/index.html

  • Oh I didn't know that. When I was reading up on it, I thought it was safe to take as long as you were taking with K2, it said something about if you took too much without K2 it could potentially cause problems like Kidney stones, calcification in areas where you didn't want it. It's really difficult some sites were saying it's very difficult to over supplement on Vit D3 some were saying stick to RDA. I just wish people could stick to one thing and agree on it.

  • The K2 is important to take alongside D3 because D3 aids absorption of calcium from food. The calcium needs to be directed to bones and teeth where it's needed and away from arteries and soft tissues (where it can build up and cause the problems you mention) and that is what the K2 will do.

  • Susie, what would be a good level of D3 to aim for with hashi's? 😊

  • I'm unaware of a specific level of D3 for Hashi's patients. The recommended level is 100-150nmol/L (or 40-60ng/ml when that unit of measurement is used in testing).

    Vit D Council vitamindcouncil.org/i-teste...

    Grassroots Vit D Disease Prevention Chart (scroll down for links to both nmol/L and ng/ml versions) grassrootshealth.net/docume...

  • With iron you preferably should have:

    1. A full blood count, and,

    2. Ferritin tested, and,

    3. Iron panel.

    If you can get all these done then someone on here will interpret them for you to see whether you actually do have an iron problem.

    As one issue with iron is that some things are high/normal e.g. ferritin due to inflammation when in fact you have an iron deficiency.

    Another is due to improperly treated hypothyroidism you iron serum level could be high.

    In addition NHS labs in some places use a lower haemoglobin level then what NICE and WHO recommends. For example I was recently told my haemoglobin level was good on the NHS scale when it was actually too low for me to donate blood, if I was actually able to. So that logically means my haemoglobin level isn't good and the doctor who stated that was talking out of their behind.

    Also you can help yourself also if you do a Data Subject Access Request under the Data Protection Act at your GPs. Then go through your medical records and note down the blood test results plus ranges of any you have had particularly since 16. That way you will be able to see whether there were indications:

    1. that you had a thyroid problem, and/or

    2. that you had other issues.

  • I think what you need to know is that the thyroid gland makes mainly two hormones : T4 and T3.

    T4 is a storage hormone that has to be converted into T3, the active hormone.

    For some reason, despite the fact that the thyroid makes both T4 and T3, the endocrinological world has decided it's OK to treat hypos with just one of those hormones - T4 - and rely on conversion for return to normal health.

    This is fine for the majority of people, who convert well. But, some of us don't convert very well, and we need to take T4 plus T3, or T3 only.

    A lot of people do very well on NDT - which is T4 + T3 - but those of us who convert very badly, need more T3 than is found in NDT. So, they sometimes do better on T3 only.

    It's all very individual, and you have to find out what suits you best - and how much you need - by trial and error. You might be lucky and find that synthetic T4 is all you need. So, as it's the easiest to obtain, it's a good starting point.

    But, be warned, nothing is going to work for you, if you nutritional deficiencies - which most of us do. So, before doing anything else, it would be advisable to get your vit D, vit B12, folate and ferritin tested, to see where you are. :)

  • Thanks greygoose that makes perfect sense, think I'm beginning to understand it now.

  • Good. :)

  • I've been told by 2 Endos that the thyroid doesn't make T3 and only T4... and that the T4 is converted to T3 in other organs (I think the liver mainly?). But I've also read that the thyroid does in fact make small amounts of T3 while the vast majority it produces is T4.

    I don't know what the believe haha. Do you have any info on this greygoose?

  • I am horrified that an endo would say such a thing! It makes mainly T4, but a substantial amount of T3, and tiny amounts of T2 and T1.

    If you've got the time, look through the posts of diogenes on here. He's written a paper about it, I believe, saying that the thyroid gland makes more T3 than was at first believed. But I've never heard anyone ever say before that it didn't make any! If that's the sort of thing they learn in med school, no wonder they're all so ignorant and useless.

  • Thanks greygoose! Yea you'd be surprised at some of the things these two Endos have told me, luckily my current Endo has a bit more of a head on his shoulders.

  • Thank god for that!

  • NDT is the very original thyroid hormone replacement since 1892 and it still can be prescribed by Private Doctors usually or sourced by ourselves. It contains all of the hormones a healthy gland would have produced.

    I believe when levothyroxine was introduced (T4 only) that

    the pharmaceutical companies did a big promotion and probably didn't tell the whole truth and levo has gradually been accepted by the whole world's Endocrinologists as the 'perfect' replacement for hypothyroidism. They don't do their homework very well, I'm afraid otherwise we wouldn't be on a forum looking for help.

    Doctors worldwide have lost their licences because they refused to prescribe levothyroxine and still prescribed NDT or T3. These doctors were trained before levothyroxine and only NDT was available. So they were aware it was superior but it meant they lost their licences if they still prescribed, so many carried on with the levo only regulations.

    See all notificationsand that NDT was

  • it would also help if you posted your actual free t4 and free t3 figures and ref ranges

    because you seem not to understand exactly how the body works when its becoming hypothyroid

    you also need to get hold of previous results especially iron because whilst a doctor may gave said iron levels were good i doubt they tested ferritin which can be very low even when other levels are good

    Many people also find that simply eating liver increzes ferritin better than iron pills you can always mince a little into shepherds pie or a rich veggie soup etc

  • Hi reallyfedup123 these are the latest thyroid results I have :-

    Thyroid Function

    TSH 3.83 0.27 - 4.20 mIU/L

    T4 Total 86.7 64.5 - 142.0 nmol/L

    Free T4 12.60 12 - 22 pmol/L

    Free T3 4.81 3.1 - 6.8 pmol/L

    Immunology

    Anti-Thyroidperoxidase abs 12.6 <34 kIU/L

    Anti-Thyroglobulin Abs 44.0 <115 kU/L

    I have had some done since, they were NHS ones and done mid afternoon so I suspect lower but when the nurse said "they are normal" I asked for the results and her response was "they are in range you don't need to worry!".#

    As you an see it's mainly the T4 I'm worried about as it seems very low and only just in range. When I had tests done a year ago it was 12.92 and TSH was 2.25 so it seems to slowly be dropping and TSH creeping up but not enough for them to treat!

  • Munchlett

    in your shoes i would quite simply order NDT and self treat

    your doctors ignorance of true hypothyroid is slowly killing you

  • I self treat with NDT &/or T3. I found the Barnes Basal Body Temperature Test useful as a benchmark, & also monitored my pulse.

    I told my GP, in advance. He politely indicated he thought I was crackers, but has since been supportive regarding potential endocrinologist issues, as they seem to lack any understanding of secondary hypothyroidism, whatsoever.

  • Leverette i have been T3 only since last june but my temp still averages 35.4-35.8 i have been 36 on very few occasions. I often feel so hot i need to put ice packs on but actually body temp is in 35's.

    I considered it may be thermometer so now have 3 diff ones to check, they are always withing 0.2 of each other. Pulse resting 60-65 and 75-78 when up and about. My guess is i need to increase and i still have lingering hypo symptoms, painful feet, hip, knee and ankle joints, muscle weakness in legs and my frozen shoulder is trying to return and always wake at 3am so poss adrenal.

    These symptoms come and go, so if i increase is it too much on the days im ok....i get really cheesed off with this illness, i dont have a thyroid so im not helping an under active thyroid i rely soley on my T3.

    Interested in any ideas. All vits an minerals are top of range. Am i expecting too much to be as i was before thyroid removed, i was untreated for 6 years and wonder f the damage irreversible?

  • Have you tried NDT, Binkie?

    My skin is better taking NDT, than T3 only, which is why I'm back on a combination of the two.

  • i took ndt originally and felt great, i was bullied by endo onto a trial of levo and i became very ill, i tested privately and had RT3, i went back onto ndt without telling endobut still felt really unwell, exhausted and in pain. I retested and still had RT3 so went t3 only as i can buy it easily in france. I started to feel bit better but still not where i was originally on ndt.

    I have endo now who will prescribe t3 but he is very anti ndt. I have tried doing ndt plus some t3 but no real improvement. I will be moving permanently to france and cant get ndt sent here as postal system blocks even vitamin deliveries from amazon and my protein powder but t3 easily available.

    I follow low carb diet, supplement do gentle exercise gardening and walking but dont feel fully human yet. The pain is really debilitating especially if i over do things.

    I have failed to fill the spit test tubes on last 2 saliva tests but i have had fine tests up until a year ago and i deff fit the hypo symptoms more than adrenal, the heat i feel is not shown on thermometer as i am still under 36.....drives me bonkers :)

  • Good, at least, that you can get T3, unlike most folks here.

    I can't think of anything that will help, sorry! I hope you are moving somewhere less damp, & you fond a good doctor there to help you. My French work colleague often said how much better their health system is, so perhaps they'll suggest something to make you better.

  • If you have trouble producing saliva have you thought about sjogren's syndrome, a autoimmune condition characterised by dry mucous membranes, eyes, mouth, vagina, digestive tract

  • yes we have ruled that out but thank you for asking, its a nightmare negotiating thro all this stuff x

  • It certainly is, I'm still trying. Best wishes for a healthy life x

  • Hi Binkie you say you are on a low carb diet, are you also gluten free? This helped me lots with muscle pain and migraine, also probiotics are good.

  • binkie after thyroidectomy many many patients are actually far better on NDT not levo or t3

    my husband being a case in point

  • i did go back on ndt but it just didnt improve at all and still had RT3 so went back to T3. I have a long holiday 6 weeks in france july/august so may try again while i have time to do it without work and normal life in the way :)

  • ok ...is it possible that something else is blocking /affecting your body like the use of aluminium or non stick coated or foil cookware or that your water supply co is using any form of alum or aluminium or flouride in their treatment works

    coffee and tea vending machines etc etc must be thought about too

  • i am a water engineer and as part of my job i filter and reverse osmosis water to remove all metals and 95% of all contaminants, hormones, pesticides etc so i have been drinking pure water for years. I work with various illness (cancer, low sperm, immune depressed etc) as stuff in our water can be detrimental to their health/meds. Fluoride is a big one for us, in Kent where they dose the water, there has been massive spike in UAT.

    Uk water compared to europe very good but still affects small % our tap water is better than most bottled.

    I took on board 2 years ago about your comments on saucepans and george forman type grills and had a good clear out. I have reached a point where i think may be i am as well as im going to get, keep doing what i must and roll with it :(

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