Have been struggling with underactive thyroid symptoms for around 2 years. I finally got a diagnosis of Hypothyroidism in September and then Hashimoto's in October after a round of blood results. I was also going through long covid at the time which delayed the diagnosis unfortunately.
I was started on a dose of 125 mcg Levothyroxine and am still on it. Been on is for around 12 weeks. Since starting the Levo, I don't really think I've been any better to be honest. The constant fatigue pains went but my tiredness and general looking and feeling ill are still there.
My TSH level before the Levo was 8-9. After my first 6 weeks of being on it, my TSH went down to 1.32 (but I think I took my LEVO the morning of the test). Only after reading this site did I realize the etiquette around taking LEVO and testing etc. So that being said, here are my latest round of blood results from last week:
Welcome to the group. Basically you're under replaced at the moment. 125mcgs Levo is a pretty low dose for a man. Your TSH needs to be under 1 so you probably have a few dose increases before you get there. Many GP's will be happy with your results if they are within the reference range but you need to be persistent with them and point out remaining symptoms and push for an increase. You need a 25mcgs increase now.
Well done doing your homework on the vitamins, they really do make a difference getting them optimal. See if GP will add ferritin and folate next test?
Hi SlowDragon, thank you for your reply. I was checked for coeliac in some recent blood's before these bloods and it was all normal. lgA was 2.00 g/L. If that's the test you mean?
Only 5% of Hashimoto’s patients test positive for coeliac disease but further 80% find strictly gluten free diet helps, sometimes significantly or is absolutely essential
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
As test is negative you can consider trialing strictly gluten free diet
Trying gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
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
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.
So, here is the next topic I wanted to talk about. I have only been an collected the LEVO 3 times now but on each occasion I have picked up a different brand for the 25 mcg tablet. Well, 2 brands but always different back to back if that makes sense. My first lot were MercuryPharma, then I was given Teva and now back on MercuryPharma. As I'm quite new to it all, I wasn't looking and didn't realize the difference between brands. BUT, this time round, I have noticed the MercuryPharma give me an increased heart rate and palpitations. This basically started as soon as I started tasking the MercuryP. BUT, I was on the MercuryP when I first started the LEVO so....I'm not sure
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Great. So what I might do is, book a routine appointment at the doctors and ask to be increased to 150. Do GP’s usually kick back these sort of requests though?
Before being Hypo I was 72-73kg. I now sit between 76-78. Thank you
See if you can find any (especially recent ) iron and ferritin results
How long have you been vegetarian
could you test full iron panel test including ferritin via Medichecks?
Email GP now and say Mercury Pharma brand doesn’t suit you. Can they give you new prescription for 50mcg tablets so you can get Accord tablets and you will cut in half to get 25mcg dose daily
(explain Accord brand don’t make 25mcg tablets….as GP unlikely to know)
Just found Ferritin and Folate. Not had them done since 8th April 2019 this is was right after I went Vegetarian so I’ve not had any done since being vegetarian basically!
I have noticed the MercuryPharma give me an increased heart rate and palpitations. This basically started as soon as I started tasking the MercuryP. BUT, I was on the MercuryP when I first started the LEVO so....I'm not sure
When was change back to Mercury Pharma?
It could be that as you’re currently under medicated…..MP was better absorbed and caused palpitations
Palpitations can be due to being under medicated…..not just over medicated
Do you wear a fitness watch ……Fitbit or Apple or similar
Many can do ECG recording on demand
Worth checking resting heart rate and peak rate …..also if getting ectopic beats
I have been back on Mercury for 1 week now. And the heart problems started instantly after being back on Mercury.
Yes, I wear a Garmin watch. As I am an athlete, I am very aware of my HR etc. Since being back on the Mercury, my HR has very much increased when working out and I’m getting out of breath and struggle to breathe sometimes. And also my resting HR is creeping higher. Usually sit at around 38-39. I’m currently up to 44-45.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Have you ever tested iron and ferritin
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
I had heart problems when I was under medicated. Palpitations and breathlessness. My then endo associated racing heart and palpitations with over medication and refused to increase my dose. I changed endo and with an increase in dose those problems went away or diminished substantially. Consider carefully before mentioning heart rate increase to the doctor. I’m on 125 now and was on 75/100 at the time
Hi, I used to do a lot of marathon training before being diagnosed but since then have cut right back - you may want to do the same until you get fully stabilise your health. Issues
Selenium/zinc/magnesium are critical for hypo blokes I would say and you may be wise to consider these alongside D/B.
Sufficient protein is also critical.
Certain foods have proved to be great hacks including daily spinach /celery /blueberries
Certain foods may not be helpful eg caffeine and dairy
Good luck - we are all different but being open to trying new ideas is key - if it works stick with it and if not drop it
All I will add is that if you only allowed me a single supplement and I had to drop the lot i would always choose magnesium glycinate above all the rest - it never comes to this of course but demonstrably this has the most obvious impact on daily health
I did try brazils but found over time the version of selenium that is more absorbable (not selenite) was a better option -but again if this works well for you stick with it
first.... keep this up your sleeve in case GP is reluctant to increase dose ... some of them (most) think that once your TSH is anywhere in range ,you're fixed, but healthy people commonly have TSH around 1 ... not 3. Most of these recommendations telling GP's to keep TSH lower than 2ish are from sources they will recognise as sound. healthunlocked.com/thyroidu...
Second .... i can feel a difference when i take mercury after taking other brands... feels like it's a bit 'faster' somehow , like "a small whisky" ... but i'm ok with it once i've been taking it for a week . Most other brands eg Accord and Wochhardt, feel a bit more like "2 pints of beer" to me.
Constantly changing brands every prescription can really mess some of us up , makes it too hard to know what is causing what ... I eventually realised TEVA makes me feel really naff after about a week / 10 days on it .. so i now make sure i don't get that brand anymore and have been much better since. ( find a helpful chemist and ask hem to put a note on computer to not dispense a brand if you have problems with it , and check what's in the bag before leaving the counter.... some of them are distinctly unhelpful, but helpful ones do exist)
keep a good diary of what brand you get , and how you feel on it .. (pay attention to contents of 'Northstar' boxes , as their 25mcg size are actually TEVA but 50/100mcg are Accord).... Good records will help you figure out if you feel better on some than others..... bear in mind it sometimes takes 7-10 days to begin to feel the effect of a different brand.
Most chemists/ Doctors will say "rubbish, they are all the same ... " but some of us really can tell a difference, and recent advice from the MHRA now tells them to give us consistent brands if we have problems.
some fascinating comments about different brands of T4 - mine seem to change every time and I have not even thought of a difference - perhaps I should be aware now of the possibility and sense check and changes
Dexter - my GP “signed me off “ once TSH dropped to 3 and I have spent a couple of years fine tuning everything to improve T3 conversion to get down to below 2
I worry if you simply keep adding more Levo you can lose focus on the thyroid efficiency hacks - I suspect I am now around 1 but will test shortly
It has taken 2 years and perhaps ever increasing Levo doses would have sorted things sooner - but it has forced me chuck dairy as it is a natural disruptor for keeping TSH higher for longer
Hi Daniel, thank you for so much for taking the time to reply and help me. In a brief summary, would you mind laying out what the efficiency hacks are please? So far, I’m going to get some magnesium glcinate and order a full iron screening.
pretty much as I suggested above really - we are all different so what works for me may not for you but in terms order of max bang for your buck
1.Magnesium glycinate
2.Give up milk entirely - other dairy if you possibly can and don’t mix milk with coffee
3. Ton of spinach (plus handful of dried prunes ) each day for iron and vit K (helps D absorption)
4. Blueberries /celery juice and daily bananas smoothies
5. Prawns, fish and 2-3 eggs a day
6. Low levels of caffeine if you can and low added sugar
7. OJ can be invaluable if you need to raise potassium levels regularly
What you won’t see on my list is gluten free as I have never found gluten free bread enjoyable at all - this may be vital though if you don’t tolerate it
In one line load up of nitrate, potassium and iron rich foods as best you can. Google high nitrate foods eg beetroot etc
This may not work for everyone so take every caution etc and good luck
High cortisol levels can impede conversion of T4 to T3. Given that you were presumably training hard before you started thyroid supplementation with T4 your adrenals might have been compensating for low thyroid levels by the over production of cortisol with the result that your cortisol is now out of whack, too high or too low. See Chris kesser free downloadable ebook on how high cortisol impedes conversion. I’m on a train about to arrive at destination so this post is link light but that could be an avenue worth exploring. Then consider doing a cortisol saliva test from Regenerus labs. A search here will bring up a lot of discussion on cortisol tests and the interaction with hypothyroidism.
I started with underactive years ago, wouldn't take the Levothyroxine at first but it helped enormously, it took ages for it to settle, so bear with it, I have not had any other help with it other than 6 monthly blood tests but it does affect all of your functions in the body, and the fact that you do so much exercise, there is obviously something that perhaps needs checking as soon as possible, if the tablets are not helping.
I am an ex nurse and can only wish you the best of luck, it is horrible at first just stick with it you will start to feel better eventually, vitamins not sure about, I take cod liver oil and multivitamins but not heard of the others, are your joints aching if so glucosamine, I have them every day. Its a minefield everyone is different so go and see your GP if possible.
i copied this from a reply i found written years ago by Achilles_Pain . but it's very true.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far.
U have the hashimotos u can see that although 513 isn't that bad. I had 10,000 antibodies acting against my thyroid. I suppose I have low t4 as someone said that t4 shud be above 19. I would say get rest and just get used to it. It's tougher in winter. I think there r 200 functions of thyroid so testing by no means shows everything. But d very sensible to take. C .
Vasiliki99 ....just to clarify a couple of things in your reply that might confuse people.
TPOab (thyroid peroxidase antibodies) don't "act against the thyroid" .... these antibodies are not what does the damage ..the immune system does the damage .. TPOab are part of the clean up process after the immune system has damaged it .
So when levels of TPOab are high, that is how we know it has been damaged.
A TPOab level of around 500 is considered a 'strong positive' indication of Autoimmune thyroid disease , but ... but as you say some people do have much more .. i had TPOab 2499 (0-50) at diagnosis, and then >3000 (0-50) a few months later. ( "> "means the test method used could not count higher than 3000)
I;m just curious ..... When you say you had 10,000 .. are you referring to TPOab , or TGab ? ... i've seen result of ">6000" before for TPOab ... presumably because that test method could not count higher than 6000.
Did your get an actual number for your 10,000 result or was it a "> " ? and do you remember what the lab range was ?
Also . "someone said T4 should be above 19 " .. we always need to know the reference range for fT4 results . There are several different reference ranges (used by different testing machines).. and the result you get ie "19" ONLY applies to the range that was used by that machine.
Some machines reference ranges for fT4 are eg [12-22] so on that range, a result of 19 shows an fT4 level which is about 70% of the way through "the range of 95% of healthy people"... ie "good" .
But other machines have lab ranges for fT4 of eg [7.9-14] and on that range, a result of 19 shows the person has an fT4 level that is much higher than is usual for 95% of healthy people. ie. 'High'
So to know if your 19 is ok or not, you need to know the lab range used.
Yes the 19 was for 12-22 and I have never achieved beyond 14. Tried T3 T4 etc. No luck. I had no idea the TPO was a clean up job cleaning the damage of s mad immune system attacking the thyroid as if it was a baffie thus exhausting the body and not having a good system ready for real germs and bad things so this how doc explained it so we r immune suppressed and in danger. We can't fight things off easily the immune system is involved in hunting the thyroid gland.
These immune system come inflammation that causes more wear n tear viruses n bacteria proliferation in unwanted places biofilms leaky gut. Particles going up to our grain even and wrong things in our blood weak WBC count and slow clotting even our blood is weird.
The car body doesn't even work like a car with poor gears and systems the heat does not pump the blood well less oxygenated blood. This is what I've learnt over the years about deadly hashimotos thyroiditis. A scan revealed liaisons in the gland from immune attack.
I have had lower level TPO and TG thingy maybe the highest I ever had was 10,000 but it cud been thr TG thing doctor told me it was acute exhaustion of body with hashimotos
I ray healthy detox read work a bit but not the body functioning like it could of, still I have had happiness I was diagnosed 2001 20 years later n counting xxxxxxx
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