As of November 25
Serum Free T4: 20.3 pmol/L (9.00 - 19.10pmol/L)
Serum TSH level: 0.02 mIU/L (0.35 - 4.94mIU/L) Listed as Abnormal
Serum free T3 level: 4.4 pmol/L (2.90 - 4.90pmol/L)
Vitamin D: 168 nmol/L Listed as Abnormal as it's >75 nmol/L
Serum vitamin B12: 560 ng/l (187.00 - 883.00ng/l)
Serum Ferritin: 139 ug/l (22.00 - 275.00ug/l)
LDL Cholesterol: 4.5
HDL Cholesterol: 1.36
What thyroid replacement hormones are you currently taking
How do you feel
Was test done early morning, ideally around 9am and last dose levothyroxine 24 hours before test
150mg Levothyroxine, taken at night ((9:30pm), now taking 125mg, GP said I was overmedicated, so values from 150mg, test done at about 11am.
How do I feel? Well T4 has never worked properly ever since I started on it 14 yrs ago, I don't convert well. I shiver below 23C, brittle nails and hair, skin breakouts on my back and when I started on it, I immediately got awful pains in my legs when walking. GP claims its my narrow arteries and the pains starting literally within minutes of taking Levo is 'coincidence'. You can't win.
Sorry misread this
Serum Free TSH: 20.3 pmol/L (9.00 - 19.10pmol/L)
Obviously you mean Ft4
Last dose levothyroxine should be 24 hours before test
If you took at bedtime and tested in morning Ft4 is falsely high
TSH would be higher at 9am
You might benefit from addition of T3 prescribed alongside levothyroxine
But first
Looking at previous posts you have Hashimoto’s confirmed by high thyroid antibodies
Are you on absolutely strictly gluten free diet or dairy free diet
If not get coeliac blood test done BEFORE cutting gluten out
If this helps stick on it and then also try dairy free diet too
You’re not on statins are you?
Been here before, don't have coeliac, am not gluten intolerant
but have you actually tried 3-6 months without gluten?
Or tried dairy free
no, I have no intention of doing that. I remember exactly when my thyroid got whacked, in March 2002 as a result of a very severe stressful situation. Felt awful for about 3 weeks, couldn't tolerate having my neck touched right over the thyroid (this symptom lasted for a few weeks) and then couldn't tolerate low temperature (below 23C), got boils on my back (never had them before), my nails breaking, hair thinning, nothing to do with gluten.
I can see you're adamant about not going gf but without trying you will never know if it can be helpful. My doctor for yrs encouraged me to try it and I refused because frankly I loved my gluten filled food. Long story short, I caved in and did a 3 month stint and it helped me. Been gluten free for several yrs now. If your answer is still a hard pass, then think of swapping to sourdough bread , made with ancient grains since they have less gluten.
I've yet to see any evidence that links gluten to my damaged thyroid. As I've stated, extreme stress impacted on my thyroid, the causal link is obvious to me and it has nothing to do with gluten, ditto coeliac (I've been tested 3 times for celiac).
It takes scientists/researchers sometimes decades to find an associated link between two things that they have been studying. Just because they didnt see it at first doesn't mean it wasnt there. Through trial, error and experimentation they get to the answer. So the mentality of if there is NO OBVIOUS link that I myself can connect to ie gluten and my hypothyroidism, then I'll dismiss it is detrimental in my opinion.
In the long run its your well being and taking a few weeks to trial something wont kill ya. Either it will work or it wont. If it doesn't cross it off the list and move on to the next thing to try and see if it helps. Also just because you feel like your hypothyroidism was stress induced doesn't mean that other factors cant come into play later on. I developed intolerances later on in life.
Just because the celiac test came out negative doesn't mean you dont have an intolerance. My celiac blood test came out negative and I had an intolerance and it was discovered after I went gf. Also I watched a medical show yrs back where a woman had celiac but all her test showed negative. She finally did a biopsy through endoscopy and that's how they discovered it. All to say, it's not always black and white.
Anyway it's up to you. Before going gluten free, my favorite was sourdough kamut bread.
On a side note, my doctor was on my case for a few yrs to trial it so trust and believe, I wasnt one of those that did it easily.
No one has said ever that gluten damaged your thyroid, or anyone else’s thyroid
Gluten does however contain a protein called zonulin which pushes the gaps apart between cells in the gut in every one
People who are well, can cope with this. Others can’t
i still don't see the connection to my thyroid
it’s to do with combination of gluten opening gaps between cells in gut, this allows food particles to cross inappropriately from gut into blood stream and gluten protein is very similar to thyroid cells ……known as molecular mimicry
gluten causing molecular mimicry (see this Amy Myers link)
amymyersmd.com/2018/04/3-re...
Gluten is a particularly large protein, happens to be structurally similar to a number of your body’s tissues, particularly your thyroid.
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Trying gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Me too exactly.
I was astonished to find in 2016 I am severely gluten intolerant (after 20 plus years on levothyroxine)
And now (after physio recommended this summer that I really should try it) also finding dairy free extremely beneficial, pity I never tried either all those years earlier
So I assume you no longer take levothyroxine, or are you saying that the levo now works because you've removed gluten from your diet? I'd like to know if it's been shown that there's a direct correlation between gluten and thyroid function and if so, what's going on?
Yes I do…..more on my profile
Levothyroxine plus T3 prescribed on NHS
But I don't take T3, so again, this introduces another variable... What annoys me is the fact that it's not simply the thyroid we're talking about, it's the entire endoctrine system, the hypothalmus, adrenals, pituitary, mess with one and you mess with everything else. T4 is a simplistic, monotherapy that works for some, maybe but again, as I've said before as it's largely a disease of the female half, the medical business ain't interested in investigating the complexities of a system, the endoctrine, that's so complicated it affects pretty much everything, from the brain to digestion and all the stops inbetween.
Your high thyroid antibodies confirms cause is autoimmune
Trigger can be stress or virus, (eg EBV, H pylori, SIBO etc) or environmental toxins etc etc
hypothyroidmom.com/hashimot...
Autoimmune diseases frequently cause, or are caused by leaky gut.
ncbi.nlm.nih.gov/pmc/articl...
Many studies have revealed that a leaky gut paves the way to the development of autoimmune diseases. Therefore, healing the leaky gut suppresses the symptoms of these diseases;
Gluten and dairy are inflammatory foods
wellandgood.com/gluten-dair...
Inflammation and autoimmune disease often linked
Levothyroxine mono therapy tends to result in lower Ft3 relative to Ft4, often affecting gut function
Gluten and dairy are inflammatory foods
Hmmm... that's gross exaggeration isn't it? We've been eating wheat for 1000s of years, in fact wheat is probably our first farmed food and all of a sudden, in the 20th century it's the cause of all these diseases? I don't think so. Leaky gut? Not even proven to actually exist. In all likelihood, poisons in the air, water, environment, processed foods, factory farms, sugar, stress, in a word, capitalism, has created the perfect storm in our bodies. This is why I'm skeptical about the gluten idea for myself at least. I have no symptoms at all, that point to gluten, whichI eat in bread and organic whole milk and have done for decades without a problem.
OK …….your choice
Modern wheat is vastly different from ancient grains
Add to this the spraying of crop with glyphosate shortly before harvest. Glyphosate can cause/contribute to leaky gut
frontiersin.org/articles/10...
Autoimmune diseases are a product of our modern age
Slowdragon, that's exacty what I said and I don''t eat processed bread, I don't eat processed food period. I've never had a can of Coke, I can't stand the chemical taste f it. My diet is fresh food, veg, fish, meat, fruit, organic where possible to reduce the intake of pesticides and other adulterants. That's why I don't link my diet to my thyroid issues but, as I said, to stress. Prior to the thyroid, I had never been really ill in my life, I had never been in hospital, I don't get colds, I haven't had flu for over 45 years.
When your metabolism is running too fast or too slow -
whether hyperthyroid or hypothyroid,
and your T3 and T4 are not perfectly balanced for you,
and you have symptoms of either health issue,
your body will have trouble extracting key essential nutrients, vitamins and minerals from your food no matter how clean, fresh, and well you eat.
Too fast or too slow a metabolism causes all sorts of problems and getting the right balance of T3 and T4 that works best for you is all we are all trying to do, as we are all different and coming at this with our own unique body and needs.
People who are hypothyroid often find they have low stomach acid and a slowed digestion which can cause poor gut function, digestive issues, SIBO and / or constipation.
Helping to improve one's gut function by checking for food intolerances helps with the absorption of thyroid hormone replacement which hopefully will then increase one's ability to convert better the T4 into T3.
Not guilty. Generally, I'm as regular as clockwork but medications can interfere with my digestion as can stress of course but I think my diet is the least of my problems, thank goodness.
Yes, stress plays a big part - inflammation, antibodies and any physiological stress ( emotional or physical ) depression, dieting, and ageing all down regulate T4 to T3 conversion.
It can become a vicious circle as if not optimally medicated you are undoubtedly stressed as you can't function as you wish - we need to find ways of stopping this cycle - and again I think that becomes a very individual work in progress for all of us.
Agreed and I think for me, it's stress not diet that's the problem and the fact that I can't get the correct treatment from the NHS and I can't afford to go private.
Yes, I get that and I too " wear that T shirt " as do many others on this forum :
and why I write on here trying to help others become their own best advocate :
I didn't want to self medicate - no one wants to go it alone - but what's the option ?
It's the best decision I made for myself as I now have my brain engaged again, I'm not 100% but I am a lot better than how the NHS would have me.
You don't need to go private -
I can't afford private -
not many can -
I did it for myself - as do many forum members.
It is nothing to do with being guilty or not - all we are trying to do is help you identify what maybe down regulating your T4 to T3 conversion - and offering suggestions that we know have helped other forum members and ourselves as we are a patient to patient forum.
Do you wish to share what other medications you are taking ?
Ramipril, aspirin, metaprolol, famotodine and currently for a year, clopidogrel an anti-clotting agent.
BTW, my thyroid issues predate these meds by several years, so theres' no connection.
Thanks, so now I'm out of my depth though going by what I read i think there are related issues when hypothyroid :
hopefully someone better able will pop along and see this -
SlowDragon
Frankly, DIOP2, tests for this and tests for that! This is over the top. I'm sorry I kicked this off, apologies all, I had no idea people could be so obsessive with testing for this and testing for that. Frankly, this all reeks of an obsession, okay, Levo doesn't work too well with me but I'll live with it.
Mlinde . do you realise that you haven't actually asked a question ...so no one knows what it is you wanted help with.
eg : do you want help to persuade GP to increase your levo dose again. or do you want help to get T3 . or do you just want a rant that thyroid treatment is rubbish ... we all know it's rubbish . but if you just want a rant , say so , that's fine , everybody 'gets it'... but in the absence of any idea what it is you want , people are just offering suggestions of things that have helped them find the road to feel better .
No, all I wanted was feedback on those posted results, good, bad or indifferent.
well the fT4 is a bit high and the TSH is a pretty low , hence the GP has reduced the dose , (fT3 is pretty good on that dose @75% .. so conversion isn't too bad)
High levels fT4 are not a great idea to have if you don't absolutely have to have fT4 at that level to function. So trying a slightly lower dose for a few months to see how it feels is sensible ... but
Reducing by 25mcg might be too big a reduction , or it might feel ok .. you'll have to try it to find out .. (personally with those results i'd have only agreed to reduce it to 137.5 rather than 125mcg because the fT4 is only a smidge over range and if you'd left 24hrs form last dose , it would probably have been in range anyway)
have you ever been on 125mcg previously ? if so how did it feel.
(I'm not much good on vitamins, so have no useful opinion about those ).
Thanks for this. To answer your questions: For a long time, up until late into 2021 (I think around November 2021) I was on 100mcg but I started to feel quite unwell, shivering and sweating really badly from around August 2021 so my GP recommended increasing the dose to 125mcg, which I did (I think I put up the Blue Horizon test here back then which showed really high, off the scale thyroid antibodies) and I improved considerably but still shivered if the temp dropped below 23C, so I increased it to 150mcg and this helped quite a bit. Then I had the test on Nov 25 and the GP said I was over medicated and recommended I reduce back to 125mcg, which is where I am now (I switched to 125 a couple of weeks ago), so I'll stay on this dose for a couple of months and then get another test. I don't think it will ever be optimum on T4 alone but I'll just have to live with it. I'm not sourcing T3 abroad and I've given up trying to get an sympathetic endo and the GP still thinks that TSH is the yardstick. I'm satisfied if I can continue to write, which is what i'm doing again now and I just have to live with all the symptoms that T4 is not dealing with (which is the way it's been for the past 14 years anyway).
Does this answer your questions?
Re the vitamins, they all seem good to me, even if Vit D is higher than the recommended level, I'd rather be higher than lower, I've been taking the samedose for 20 years. I'm slightly anaemic and have been for a few years now but it's not critical, old age I assume, I'm 77. Like I've said, I'm not an old codger, I don't catch colds or the flu, yes my heart is buggered but it's been patched up 3 times and it's still working okay. Actually anxiety and panic attacks are my biggest concern but I'm trying to deal with them.
if below are results from being on 125mcg since Aug '21 ...... then i'd contact GP again and ask to try 137.5mcg for now rather than 125mcg , as i strongly suspect 125 will prove to be not quite enough and you could feel worse again..... your fT3 is MUCH better now your fT4 is higher. (137.5mcg can be done either by taking 125 / 150 alternate days.. or cutting 25mcg tabs in half )
15 March 2022 ..( on 125mcg ?)
TSH: 0.84 (0.27 - 4.2)
T4: 12.0 (10 - 23)
T3: 3.8 ( 3.1 - 6.8) .......see how on 125mcg your T3 @ 19% was much lower than when taking 150mcg.... so going back to 125 seems bad idea to me .
~~~~~~~~~~~~~~~~~~~~~~~~~~~
earlier results when on 100mcg .....(not surprised you felt horrible~ bugger all T3)
21 September 2021
TSH: 21.30 (0.27 - 4.2)
T4: 15.2 (12 - 22)
T3: 2.6 (3.1 - 6.8)
Dear Tattybogle,
I just sent your reply to my GP (who knows who it is, as I get a different one every time I talk to them) and told him that the numbers talk and it's up to him. Actually, I have a lot of 25mcg, I've been hoarding different strengths, i have 100s, 50s and 25s so regardless I could do it anyway.
But thanks ever so much, what you've written makes perfect sense.
M
Frankly, this all reeks of an obsession, okay, Levo doesn't work too well with me but I'll live with it.
I mean, I find it weird that you aren't obsessed with regaining your health and have just resigned yourself to surviving for your remaining years but I guess we're all different. 🤷♀️
I run a yearly thyroid blood panel to include the vitamins and minerals and do not consider that to be obsessive :
Why did you post your blood tests if you weren't prepared for some advice and suggestions ?
I got some very sound advice from tattybogle and acted on it, thanks very much.
Good :
I eat in bread and organic whole milk and have done for decades without a problem.
Except now you have an autoimmune disease. (Which isn't like a cold that you just wake up with one day.)
I don't know how to say this but I'm convinced that I'm not gluten intolerant, I have no symptoms whatsoever, my thyroid symptoms started on a very specific date (several years before I was diagnosed), I struggle in vain to see any kind of connection between a condition which appears to be totally invisible, gluten and my thyroid. What can I say? I'm not embarking on a six month long experiment that will disrupt my life based on what?
Well, if you're not prepared to put yourself out a bit to attempt to improve your health we're all wasting our time responding to you.
Everyone here has been where you are and they're taking time out of their days to try to help and support you.
So far you've been nothing but rude and arrogant to everyone. 🤷♀️
Who exactly have I been rude to? Arrogant? It strikes me that you're being rude to me by your accusations.
Yes, you're probably right But this forum gave me my life back and continues to offer support while I get back to 100% health.
It's hard to watch someone not only dismiss outright but deny the truth of, all the suggestions and knowledge that the admins and posters are offering simply because you've decided it won't work.
I genuinely wish you the very best of luck and hope you find a way to recover your health.
I was exactly the same …..zero symptoms of gluten intolerance….just couldn’t walk and was looking at life in a wheelchair aged 50ish
Many, many members have been equally astonished to find gluten was causing significant issues
I accept it’s difficult initially to change your diet
But I think it speaks volumes that thousands of members are on strictly gluten free diet and they never ‘cheat’ and sneak in some gluten because it’s has such a disastrous effect
you can’t be almost gluten free…..it’s all or nothing
Similarly with dairy free…..if it works ….it’s easy to stick on
Zero symptoms but you couldn't walk? How does that work?
I had absolutely no gut issues…..no bloating, no burping, no acid reflux, nothing
But could only walk at a snail’s pace for about 10mins before pain became unbearable
I only tried gluten free because I was desperate, was utterly surprised to find noticeable improvements within days of cutting gluten out completely
I spent about 2 weeks before I switched ….considering what I would eat at each meal instead
Need to be careful of cross contamination if others in house are eating gluten
Mlinde 'Zero symptoms but you couldn't walk? How does that work?'
I expect SlowDragon will come back to explain more fully what she meant by that. In the meantime, here's a link to the symptom list on coeliac.org.uk coeliac.org.uk/information-...
Most doctors think you need to have tummy/bowel issues, or skin rash (dermatitis herpetiformis) to have any problems with gluten. But lots of people have other symptoms that won't immediately shout 'gluten intolerance', and even when tested, are negative for coeliac disease. Nevertheless, gluten intolerance without a positive coeliac test really does exist, and plenty of people do genuinely feel better on gluten free diet. Of course, that isn't to say everyone should be gluten free. But if you have unexplained symptoms that just don't go away, it can be worth trying to see if it helps.
Well I took a look at the list and I don't have a single one of them except slightly anaemic, which is probably age related and quite recent and I've been blood tested for coeliac several times, so on balance I'd say I'm not gluten intolerant and I'm not prepared to completely transform my diet to find out, it's as simple as that.
The point is that people can and do have Gluten Intolerance, with none of the listed symptoms, and also test negative for Coeliac disease.
There is no actual test for Gluten Intolerance. It is something you can only 'self diagnose', by going gluten free for a period of time.
If you have unexplained symptoms that just don't go away, gluten free can be worth trying to see if it helps.
No-one is trying to force you to go gluten free. Obviously it's your choice!
Other people on this forum are likely to be reading the comments on your post too, so information shared is for their benefit too 😊
I don't have any 'unexplained' symptoms, all my symptoms seem to be those related to a busted thyroid and always have been. I've never felt that I'm being 'forced' to do anything and yes, it's my choice not to go on a gluten free diet. I've spoken to my GP about it and she concurred, saying she didn't think I was gluten intolerant and frankly, I'd like to wind up this exchange about gluten if you don't mind, it's going nowhere isn't it. And fine, other people here can make what they like of all these exchanges and hopefully make some use of them.
'I'd like to wind up this exchange about gluten'
Would you prefer to have this post to be closed now? You can always start a new post if you want to discuss something else.
The research you posted has been incredibly helpful for reminding me of why I had to go gluten and dairy free. It is hard because I'm in a remote location and have a hard time getting the special ingredients I need, but I feel better already (after a couple of weeks) and know I get worse when I fall off the gluten free wagon. Still, reading threads like this help A TON. I'm so grateful to have found you -- words can't express!
This health journey of ours is about experimentation, trial and error. Glad you had the mindset to see if it could be of help.
PS: Won't take statins, not on gluten free diet but on low carbs, organic coconut oil for cooking, fish, chicken a little organic beef, lots of organic veggies and organic whole milk, I have a very healthy diet, not overweight just a buggered up thyroid.
Mlinde
Are you on Levo only and take last dose 24 hours before test and not take any B Complex or biotin in any supplement for 3-7 days before the test to give an accurate result?
What is it you want comment on, you've not said how you feel.
FT4 is slightly over range and FT3 is close to top of range - do you feel overmedicated or do you think these levels are good for you? Your GP wont like your suppressed TSH and slightly over range FT4.
Recommended level for Vit D is 100-150nmol/L according to the Vit D Council, Vit D Society and Grassroots Health with a recent blog post on Grassroots Health recommending at least 125nmol/L. Are you supplementing? If so I'd reduce your dose a bit to bring your level down to 150nmol/L.
Ferritin level seems OK providing there it is not falsely elevated due to inflammation.
Can't comment on cholesterol as there are no ranges.
See my other response. Re Cholesterol, over 4.0 is considered bad. Re Vit D, I think it's just right and yes, I take 1000 iu D3 45mcg K2 combined, so 168 seems fine to me. Have excellent immune system, havent caught the flu for 46 years and don't get colds, viral infections never last more than 3 days normally 48hrs.
Hello Minde :
Well it's obvious you find T4 not working well for you as you are struggling to convert T4 into T3 :
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 - T3/T4 and we generally feel at our best when we come in this range at 4 or under :
So if I divide your T4 by your T3 I'm getting your conversion at 4.61 showing you wide of the ratio.
Logical solution is to drop a little T4 and add in a little T3 - Liothyronine which is said to be around 4 times more powerful than T4 :
Or if you feel can't tolerate Levothyroxine - try Natural Desiccated Thyroid or T3 only :
Yes, I know all this, i know I don't convert T4 very well but short of buying T3 abroad (setting aside the cost), I can't obtain T3 via the NHS and I've given up trying to see an Endo, so I just get on with my life as best I can. Basically, the medical business is **** and I try to have as little to do with it as possible. The latest bloods just confirm what I've known for years.
OK then :
You tried 
I'm sorry if i seem cynical but I've had 14 years of this. Levo, for the most part keeps me kinda 'norma' unless I'm under-medicated, in which case, life gets unbearable. I'm resigned to my situation pennyannie as long as I can function, which for me, is being able to write.
I totally get it -
I'm in a similar boat after being treated with RAI thyroid ablation for Graves Disease in 2005 .
Why the NHS still suggests this toxic substance for an auto immune disease that you will still have, but also then be with a burnt out and disabled thyroid gland is a mystery to me and why do they continue with this treatment option if we talking of health and not finances.
We now have some research papers into my treatment - yet nothing seems to have changed at the coalface.
ncbi.nlm.nih.gov/pubmed/306...
pubmed.ncbi.nlm.nih.gov/338...
This forum was instrumental in my helping to understand my own situation and now I just try and give back where I can to hopefully help constructively someone else struggling :
I now know of the options and much improved self medicating - it is not ideal and though I have worked for over 40 years and paid a full stamp and on a single woman's pension I now have no health support for a treatment the NHS told me I needed to have.
Increasing numbers of U.K. thyroid patients are getting prescribed T3…..either privately or on NHS
Over 60,000 prescriptions in England in last year
openprescribing.net/analyse...
Well I'm not one of them, I've been refused inc. being refused an Endo appointment.
Many people initially see endocrinologist privately
Thyroid U.K. has list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
tukadmin@thyroiduk.org
But would probably be good idea to try ruling gluten out as in issue first
also Dio2 gene test can be helpful assuming you test positive
thyroiduk.org/deiodinase-2-...
Presumably you know to take levothyroxine on its own on empty stomach and at least 2 hours away from all other medications or supplements
Acid reflux is common hypothyroid symptom
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
stopthethyroidmadness.com/s...
thyroidpharmacist.com/artic...
How to test your stomach acid levels
healthygut.com/articles/3-t...
meraki-nutrition.co.uk/indi...
huffingtonpost.co.uk/laura-...
lispine.com/blog/10-telling...
I'm nto going to a private endo, £400 and up. End of story.
Usually around £250 for initial consultation
Before consultation gathering all previous test results on to spreadsheet to show results over time and at different doses
Essential all four vitamins are optimal
Private prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies at 50-60p per tablet
Typical daily dose is 2 or 3 x 5mcg per day
Starting on just 5mcg initially.
Cutting 20mcg tablet into 1/4’s
T3 cost £11-15 per month
And usually around £100 for follow up consultation annually
As I've already stated here, I'm not in a position to finance this route.
Sorry to hear about your predicament. How about looking into glandulars because it works for some. Metavive and Ancestral come to mind.
Imaaan, I've tried Metavive (I&II) and it did absolutely nothing, ditto Ashwaganda. the problem seems to be that once you're on Levothyroxine, you're buggered, unless it's T3 or a mix. I think Levo alters something fundamental in the human endoctrine system. I've said this before here, if I'd have known just how dangerous Levo is, I would never have started on it but 14 years ago, I was completely ignorant and uninformed.
Sorry to hear metavive didnt work for you. I completely understand that levothyroxine doesnt help all the thyroid population. I was sick for 20 yrs until I switched over to ndt. I trialled t4 and t3 for about 6 yrs and that didnt work for me. Due to ndt being porcine, I was reluctant to try it because of religious reasons even though there are allowances and exceptions given for anything life saving .Went on it eventually after my free t3 dropped below range. So I completely can understand the sentiment that t4 doesn't work for everyone.
Hope you find a path that allows you to access t3
Mlinde
I'm struggling to understand why you have posted this. You have given a set of test results but not explained what it is you want in response.
Members have taken the time to reply and you have shot down every response that has been made.
So if you can maybe tell us exactly what it is that you want without any further offensive language then perhaps members can respond appropriately.
hi Mlinde I’m so sorry you’re feeling awful. You say your poor health started following a lot of stress. It makes sense to me that your immune system was shocked into action (this is what happens when we are stressed, bodies often can’t tell the difference between emotional stress and physical danger) and it’s not calmed down since.
Whilst there is lots of advice here to help you think about what you can do re meds and diets, probably the most important thing is to try and calm your nervous system.
There’s lots of ways you can do this, you will have to try a few things to see what chimes. But as a starter you could try breathing exercises. They are scientifically proven to help regulate the nervous system. Yoga is good to do 2-3 times a week (on YouTube there are free classes if you can’t afford to go to one in person). Walking is brilliant (with a friend to chat is even better!). Connecting with others is one of the best all round health tonics.
I can hear your despair with your situation. It must have been such a shock and really frustrating to go from really good health to how you’re feeling now.
Good luck. You’re welcome to message privately if you want some more pointers about yoga and breathing exercises etc.
Take care.
So you weren’t much over medicated and probably didn’t need a reduction in Levo - certainly not 25 a day… you definitely need some vit d - and you can see there’s room to add in some t3… people who can’t get t3 prescribed often self source. I found t3 warmed me up, raised my temperature to normal range.
Found the debate about gluten and dairy instructive. I’ve been with you for the past four years but am going to trial giving both up in the new year - on the basis of trying everything.
Well re the D3, apparently I'm over range, as to sourcing T3, I've given up on that, I can only expend so much energy, aside from the cost implications.
sorry misread d3 result and your t3 range confused me too. Shouldn’t message when not quite awake. But my advice that 25 a day reduction is likely too much stands!
Mlinde,
Thyroid hormone levels look pretty good but it doesn't mean they are working effectively.
Being long term hypothyroid can compromise the adrenal glands that then don’t perform correctly, particularly when we suffer a shock or sudden huge stresses. Cortisol and DHEA are the two main hormones implicated within the hypothalamic-pituitary-adrenal axis and both huge dictators of our sleep/awakening, immune function , systemic and particularly psychological health.
When these hormones are over used, adrenaline joins inappropriately and causes us to feel terrible, impairing our bodies way of metabolising foods (fats, proteins, etc), risking insulin surges and blood sugar issues, our inflammatory response heightens risking intolerances such as upset tummy or hives, etc, electrolyte levels might suffer and we always feel thirsty or in need of more salt.
Adrenals may sequester progesterone to help make further cortisol, creating unopposed levels of oestrogen and DHEA falls lower as low cortisol levels use too much pregnenolone widening gaps in unbalanced sex hormones. . .
Balanced levels in all these hormones are essential for good mental health and managing stress both physically and emotionally. janeroar has given you great pointers for managing stress responses. There are also private saliva tests to measure these hormones and supplements to encourage reductions and/or better function.
Frankly, I appreciate your help but I'm overwhelmed with medical advice, it only adds to anxiety to consider all this information, the possibilities are endless. I've had cortisol tests etc. it all gets too damn obsessive.
Thanks, really interesting Radd and resonates with my own experience. Have you found particular salivary tests good? I wake early at 4am raring to go.
janeroar,
No, I haven’t used a saliva stress test for many years, probably last when under Dr P's care. They can be useful though to know what is going on and give reason for specific symptoms, and especially if one is thinking of supporting adrenals through supplementation.
I’ve done the rounds from high cortisol when young to extremely low levels including DHEA & aldosterone before middle age Hashi diagnosis. Then recovered over several years with optimised thyroid hormones, lost all salt cravings, stabilised blood glucose issues and felt absolutely great before a stroke last year and now am experiencing high cortisol bouts again. Also like you the 4am wake up 🤷♀️, so practicing what you preach 🧘♀️ 😊.
There is thought the constant 2am-4am waking is down to the liver lacking glycogen reserves required for conversion by the adrenals to keep blood glucose levels high throughout the night. Snacking on a g/f cracker & peanut butter or yogurt before bed offers proteins slow release of glucose throughout the night. I'm also back to mindful eating with a little protein at every meal that previously helped my T3 work much more effectively, ie maintaining weight, faster healing, absence of night sweats, healthy nails/hair/skin, etc, as the trouble with losing sleep is we not only lose out on the healing that goes on during sleep but the incited stress associated with sleep loss results on many unwanted adrenals changes so its a double whammy.
The trick is not to get obsessed with adrenals 😁
Hi Mlinde,
Thanks for posting; there's been some very interesting replies and it's resulted in a lively discussion.
I'm wondering how do you approach your GP when you've requested an endocrine referral?
The reason I ask is it took me two years to get a referral as my gp continually dismissed my symptoms. The only way I got one was to write a letter to the gp (it took two) including references to relevant research. Letter was to the point, fairly brief but polite and outlined why I was requesting a referral. I also had a second copy addressed to the practice manager. I handed both in at reception so they could not say they hadn't been received.
My surgery doesn't provide email access all contact is via phone or econsult. As a result of my letters I got a referral and blood test forms that were previously denied. All without speaking to anyone in the surgery which suited me fine as I was getting fed up of their dismissive attitude.
Ten months after my first endocrine appointment, I've had thyroid surgery to remove a nodule and am now on levo. All due to writing to my surgery! So if you've not done so before I highly recommend writing to your GP.
If you do get a referral make sure to get one to a thyroid specialist and not a diabetes one. My endo wasn't much help but the ENT and endo surgeon have been brilliant.
Best wishes.
Hmmm... beforeI gave up on the endo quest, I had a very sympathetic, but overworked GP who was basically hamstrung in what she could do. I supplied her with a list of endos, I started working my way through them but as I've said, frankly endlessly it became a pointless quest that started to take over my life.
Ok at least you tried.
My writing to the surgery did result in my referral. I was treated very differently once the practice manager was involved.
My mental ill health was continually blamed for my symptoms. It was very frustrating but I didn't give up even after being reduced to tears by my patronising gp.
It's still early in my treatment for my thyroid condition after many years of being hypo but things are improving.
Best wishes.
The one time I actually did succeed in getting a referral to an endo, I got a letter from the fool, telling me, before I'd even seen him, that if I was trying to get T3, to forget it! I didn't bother seeing him. I can only expend so much time on these pointless quests.
Hello, not much to say because I am no expert but if you took your meds last night then your Ft4 is not over range. It's falsely high. I did that mistake and if I started to time my labs 24h then numbers were very different my real Ft4 was only 40% and I needed dose increase instead of lowering. Now I always left 24h between my last dose and labs. I have tried NDT and T3 but didn't like them. I take only levo and it's not easy always but being patient and stick to every dose change 6 weeks have helped a lot.
Blood test results Gonadotrophin level (XE25H) Hormones ,blood haematinic levels,thyroid function test ....any idea ? 
latest bloods
My latest thyroid bloods
Thyroid bloods if anyone can have a peep?
