I'm still learning about hypothyroidism and Hashimoto's in particular and I was under the impression that TSH and T4 have an inverse relationship ie if one goes up, the other goes down.
However my TSH has been mostly falling in the last year from 3.9mUL last June (range 0.27 to 4.5)to 1.21 currently (different lab so range 0.27 to 4.2) but my T4 has also fallen slightly from 16 pmol/L (range 11 to 23) to 14.6 pmol/L (12 to 22). I've only had T3 tested once so there is no relationship to compare so far.
Possible relevant details. I'm vegetarian, drink oat milk but eat eggs and cheese. I've just started vit D and K2 spray (2 days ago) as am vitamin D insufficient. I'm using the spray because I have a lot of recent digestive issues (waiting for a test for coeliac disease).
I have a goitre and TPO antibodies at 152 IU/mL last June and 211 IU/mL currently (range for both is <34). My thyroglobulin antibodies are within range at 48 IU/mL (range <115) this was also tested in Aug but have never been diagnosed with hypothyroidism despite many symptoms that seem suggestive of it.
I am under an endocrinologist but for low potassium, they are searching for a cause for this but with no success currently.
Thanks all.
ETA Last June is June 2021 in case I was not clear.
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I think my folic acid and B12 are on the low side of normal but I'm starting with supplementing for vit D and then in two weeks adding a B vitamin supplement to include B12 but I'll answer more specifically below.
Has anyone checked folate/folic acid and B12? And GFR (Glomerular Filtration Rate - a measure of kidney function).
Yes, folate was checked in June 2021 and was at 11.8ug/L (range 2.0 to 18.7). In Feb 2022 it was 8.6 (same range) and in Aug 2022 it was 9.64ug/L (diff lab so range >3.89). Is the folate and folic acid test the same because if not I've never been tested for folic acid.
Serum B12 was tested in June 2021 at 263ng/L (range 197.0 to 771) and also in Feb 2022 when it was 282 (same range) and finally my Active B12 was tested in Aug at 94.3 pmol/L (range 37.5 to 150)
GFR was measured in June 2021 and was 25mm/h (range 9.0 to 19.0) so above range. It remained above range in Sept 2021 at 24mm/h (same range). I was not collecting my blood results at that time and this was never mentioned to me. By the time I was collating all my blood results in July 2022, it had gone down to 12mm/h (same range so within range).
Causes of potassium loss include:
Alcohol use (excessive) I don't actually drink - it doesn't taste very nice to me, very bitter. The only alcohol I have would be those in recipes like a red wine sauce if I went out for a meal - so very rare. (edited to add - I forgot to say I make my own vanilla essence which is vanilla pods soaked in vodka so I do have alcohol more than I stated but still negligible amounts)
Chronic kidney disease I don't know if this is related to kidneys or not but my endo has checked my aldosterone, renin, bicarb and the aldosterone/renin ration. This was all done in Jan 22 and I've been told verbally that they were all normal. I asked specifically about distal renal tubular acidosis and he just told me all my tests were normal.
Diabetic ketoacidosis I had the HA1c test in June 2021 and was pre-diabetic at 45mmol/mol (pre-diabetic range 42 to 47). I intentionally lost some weight this year in a (failed) attempt to avoid blood pressure tablets) which had the happy result of giving me an HA1c test result in May 2022 of 37 so no longer pre-diabetic.
Diarrhea I've spent years of suffering from a 'slightly dodgy stomach' but in the last couple of months I'm more like to be slightly constipated.
Diuretics (water retention relievers) I don't take any diuretics.
Excessive laxative use I don't take any laxatives
Excessive sweating I think I sweat less than average. I've just checked with husband and he agrees.
Folic acid deficiency See folate results.
Primary aldosteronism I assume this was what the endo was looking at when he was testing my aldosterone?
Some antibiotic use I can't remember the last time I had antibiotics.
Vomiting I can't remember the last time I vomited - more like to get diarrhoea when ill than to vomit.
I take 6 tablets of Sando-K (3 tablets twice daily). This has been slowly increasing from one a day in July 2021 to the current 6 a day.
I also take 5mg of ramipril daily - normally ramipril causes the body to hold on to potassium but I've been on it for two months and my potassium hasn't improved (although it has stabilised at 3.5mmol/L (range is 3.5 to 5.3) for last two months so maybe it is doing something.
And I've just started taking vitamin D and K2 in spray form for the last two days.
Edited to correct year.
Also: on 5mg of Ramipril for 2 months, previously I was on 2.5mg for a month and 1.25mg for a month before that. Blood pressure is still above 180/120 but GP felt it was good enough and told me to come back in 2 years unless I had symptoms.
That shows a pretty comprehensive look and understanding (by you) of where you are!
The folate/folic acid issue is subtle - I was basically trying to avoid saying one and you missing that it was pretty much the same thing. (E.g. low folate and taking folic acid but not marrying the two up.)
In July 2022 I decided I would take some kind of control of my symptoms after a year of feeling like I was getting nowhere with the NHS. So I've did a FOIA for my NHS records and I've been doing a lot of reading and organising of results. Slowly my medical records have become less like a foreign language and more something that makes some kind of sense.
I've been pleasantly surprised by how thorough my surgery has been in looking for a diagnosis but also disappointed that they didn't bother sharing a lot of the things they've ruled out. I've been worried that I had something like MS. That seems unlikely now. But they found I had thyroid antibodies back in June 2021 but never told me.
This forum has been very helpful especially in pointing me in the right direction for optimal vitamin ranges and supplementation. I'm looking forward to learning more because I really do believe that knowledge is power.
ETA - of course it wasn't a FOIA to get a copy of my medical records, I don't know why that sprung to mind but I did have to write a request for them, a verbal request wasn't enough.
The endo has told me that he will ask my surgery to test for serum magnesium - that was about 2 months ago and he has yet to send in the required form - I get the impression they are extremely short staffed. I'm going to take the letter where he says he'd like that done in when my bloods are next checked and see if that's enough to get them to do it.
However I have had my serum magnesiumlevel checked already:
June 2021: 0.95mmol/L (range 0.7 to 1)
July 2021: 1mmol/L
Aug 2021: 0.95mmol/L
But I'm sure someone on here said that serum magnesium is always in range (I may have misunderstood this as I have serious info overload currently as well as a very foggy brain) but if I have understood this correctly then I'm not sure how my magnesium levels could be checked for deficiency?
I'm reluctant to take a specific magnesium supplement as too much can cause issues too. Also I'm slightly worried that the potassium loss is being caused by kidney problems which again can cause issues with too much magnesium
If your kidneys are fine then they should cope with you taking more magnesium - any excess is excreted via the kidneys in urine. You don't have to take a huge dose. You shouldn't take more than about 300mg - 400mg per day.
Low magnesium has been found to be associated with the development of atrial fibrillation after cardiac surgery:
No, I've not been given any information on my kidney function but some of the blood tests have (I think) been looking at that.
The main problem is that no cause for the potassium loss has been found and it's a problem that has been getting worse over the last year. I went to the GP back in June 2021 with a goitre and no other symptoms. They did various blood tests and I was found to have a potassium level of 2.7 - they prescribed a one off 5 day course of sando-K which bumped it up to around 3.5 but when I stopped taking the sando-K it went back down to 2.9. Since then it stabilises for a few months, then goes down again and I have to increase the sando-K. So whatever is causing the potassium loss seems to be getting worse.
I'm assuming (but may be wrong) that in the end I'll have to get all my potassium from the sando-K so will stop having to increase the dosage. The endo has tested my urine and the potassium there is normal - so I'm not peeing it out. I'd love to know where it's all going.
I found out that a problem I had was caused by iron deficiency, and it had never been mentioned in any NHS sources of info I had read, so I like that drugs.com link. It's a US source.
I've had my aldosterone/renin ration tested which I understand is an adrenal function test (I may be wrong on this, my endo has never explained this, it's just my own reading around). He verbally told me the results were normal and mentioned in passing in a letter it was 80. He never gave a range.
Edited to add - he also did a 24 hour urinary cortisol test which (again verbally) he told me was normal.
I take a potassium supplement (potassium bicarbonate), in powder form bought from Ebay or Amazon, a level quarter of a teaspoon mixed into orange juice (the potassium doesn't taste nice so the OJ helps to disguise the taste). I take it about 4 times a week. It seems to help keep my blood pressure at a healthy level.
...
You could try an adrenal cocktail to increase your potassium levels:
Thank you humanbean, the links are much appreciated.
Low potassium (hypokalemia) can raise blood pressure. If you could increase your potassium intake it might lower your blood pressure.
I've wondered if there is a link myself. Interestingly enough my blood pressure did a big jump yesterday and I'm having my potassium tested on Weds so I'm interested to know if there is any correlation there. At the moment it's just being called idiopathic high blood pressure (which goes with the idiopathic hypokalemia, idiopathic aches and pains and idiopathic dry skin, hair loss and dry eyes).
I take a potassium supplement (potassium bicarbonate), in powder form bought from Ebay or Amazon, a level quarter of a teaspoon mixed into orange juice (the potassium doesn't taste nice so the OJ helps to disguise the taste). I take it about 4 times a week. It seems to help keep my blood pressure at a healthy level.
I am writing to my endo currently to ask if we can have a target serum potassium level of 4mmol/L rather than just in range (which means I hover about 3.5). This would still be on the low end of normal range (3.5 to 5.3) but means I could increase or decrease my tablets as required. I've asked my GP and they just said ask the endo. If he says no or doesn't respond then I might start doing what you are doing - I'm tested every 3 weeks currently for potassium levels so there is no chance of going over range imo.
I take 6 sando-K a day currently - thankfully I don't mind the taste as 3 in a glass of water is quite strong.
You could try an adrenal cocktail to increase your potassium levels:
stopthethyroidmadness.com/a...
therootcauseprotocol.com/fa...
I will look into this, thank you.
Do you know your sodium levels? How do they compare to your potassium levels?
My sodium is usually top or over range. I get it tested along with the potassium blood test as part of the urea and electrolytes panel. They've been tested 34 times since June 2021 so I won't post all the results 😛
June 2021 144mmol/L (range 133 to 146) Aug 2022 143
In the last year they've ranged from 142 to 147 but is most often 145
Regarding folic acid and folate - please read these two links:
takecareof.com/articles/ben...
chriskresser.com/folate-vs-...
Personally I would never take folic acid - I always take methylfolate.
I will bear this in mind, thanks again for the links - I will read them all now.
Low calcium could be caused by deficient / low / insufficient vitamin D. There is a complicated relationship between the two. It is better to supplement vitamin D (thus raising calcium absorption from the diet) rather than calcium, and then let the body deal with the calcium levels by itself.
A suggested dose for supplementing vitamin D can be calculated with this link :
It's only a useful link while your vitamin D is below optimal. Finding your maintenance level of vitamin D once your level is optimal takes experimentation and testing.
I am writing to my endo currently to ask if we can have a target serum potassium level of 4mmol/L rather than just in range (which means I hover about 3.5)
This is a personal decision I've made for myself... I calculate the percentage through the range for my potassium and sodium and try to keep them both well in range, at around 50% - 60% through the range. I also hope to keep potassium slightly higher than my sodium. It seems to work for me.
Do you have a very high intake of salt? It might be worth trying to reduce your intake slightly, to get your sodium level closer to mid-range.
Do you drink very little fluid? If you do it would be worth trying to drink a glass of plain water in the evening before bed to see if it helps with blood pressure.
Potassium and sodium have a strong relationship in the body. High salt intake could cause high sodium, high chloride, and low potassium:
I once, for unknown reasons, had a very low potassium level (it matched the bottom of range) and I ended up in hospital with a suspected heart attack because the chest pain it caused was excruciating. I would never aim for the bottom of the range for potassium.
If you want to try taking food grade potassium bicarbonate it is cheap as chips from Ebay, and 100g or 250g would last you for absolutely ages.
Sorry humanbean, I accidentally typed hypocalemia instead of hypokalemia. My serum calcium levels are within range and as follows:
June 2021: 2.37mmol/L (range 2.2 to 2.6)
July 2021: 2.47
Feb 2022: 2.48
April 2022: 2.55
Aug 2022: 2.48
Do you have a very high intake of salt? It might be worth trying to reduce your intake slightly, to get your sodium level closer to mid-range.
No, I don't like the taste of too salty things (it's a family joke that I like very plain, not spicy and non salty food - I think I might be a supertaster although I do like broccoli) so I add no salt to my cooked food. We eat a lot of home cooked things and I usually add half the recommended salt or less during the cooking process. Contentiously I don't add any salt at all to sweet recipes - I don't see the point 😊.
Potassium and sodium have a strong relationship in the body. High salt intake could cause high sodium, high chloride, and low potassium:
I've never had my chloride levels tested unless it's done under a different name?
Do you drink very little fluid? If you do it would be worth trying to drink a glass of plain water in the evening before bed to see if it helps with blood pressure.
I think I drink a reasonable amount. I eat a lot of fresh veg, some fruit and in the summer a lot of salad - I mostly used vinegar as a dressing (in the winter alot of home made soup - unsalted). I usually have 4-5 cups of coffee a day (1/4 tsp of coffee in each as it's too bitter otherwise) with a splash of oat milk and about 3-4 glasses of water daily, including 2 of them with 3 potassium pills each all cup sizes are about 300ml. I've had terrible problems with getting up in the middle of the night to pee, it peaked at 3 times a night in Dec/Jan but now is down to just once but I don't drink anything after 8pm because of this unless I actually feel thirsty. Currently I am peeing 5-7 times a day (and night) but previously it was more like 9 to 11 times. So possibly something is improving? I don't feel I've changed my drinking habits except no drinks late at night. Pee is a light yellow if that's any help.
I once, for unknown reasons, had a very low potassium level (it matched the bottom of range) and I ended up in hospital with a suspected heart attack because the chest pain it caused was excruciating. I would never aim for the bottom of the range for potassium.
That must have been very worrying. When I was originally found to have a potassium level at 2.7 in June 2021 I had no symptoms at all, only the goitre which had just appeared. It wasn't until probably Sept that other symptoms gradually started appearing starting with carpal tunnel and the latest thing being the high blood pressure. I do get heart palpations now if it goes below 3 though.
If writing to the endo gets me nowhere then I'll definitely look into self supplementing potassium. My thoughts are to aim for a range of 4 to 4.5 because too much potassium can be very dangerous too (my surgery's thoughts are that it's more dangerous than low potassium hence they're always satisfied with an in range 3.5)
hi Souzy so sorry to hear of your health problems. Youve kept a fantastic record....
Bit of a curved ball but has coeliacs been checked or gluten sensitivity? Testing only picks up about 50% of coeliacs so even if it cones back negative it might be worth trialling a gluten free diet.... Gluten sensitivity cant be tested by GP....can only be tested by two centres in the uk on the nhs. Youve probably looked at this but just thought Id mention it incase you havent.
Optomising your vitD levels is really important. Strong link to calcium uptake. Vitamin D Council website has exellent advice on this.
I really hope they get to the bottom of this for you.
hi Souzy so sorry to hear of your health problems. Youve kept a fantastic record....
Thank you, I started collating everything in July 2022 and I've made a lovely spreadsheet of all the blood tests and others so I can compare them. Online resources like you guys are helping me make sense of the results 🙂
Bit of a curved ball but has coeliacs been checked or gluten sensitivity? Testing only picks up about 50% of coeliacs so even if it cones back negative it might be worth trialling a gluten free diet.... Gluren senditivuty cant be tested by GP....can only be tested by two centres in th uk on the nhs. Youve oribanly looked at this but just thought Id mention it incase you havent.
My endo mentioned he wanted to test for this end of July but hasn't done the requisite paperwork yet. However, someone here linked to a NICE recommendation saying that if you have autoimmune thyroiditis then you should be tested for Coeliac disease on diagnosis. Well I don't have a formal diagnosis but I do have elevated TPO antibodies and a goitre so I'm going to write to my surgery today enclosing that NICE recommendation and asking if they can add a coeliac test to my normal blood tests for potassium levels.
Optomising your vitD levels is really important. Strong link to calcium uptake. Vitamin D Council website has exellent advice on this.
I've only just started this - three days in using a VitD spray but this forum has been such a help. I will check out the Vitamin D Council website too. I'm reading humanbean's links currently 😊
I realky hope they get to the bottom of this for you.
Thank you. I was quite blase about the whole thing when I just had a goitre and no other symptoms, I used to joke with the nurses about being a medical mystery. I'm not so light hearted about it now I have an avalanche of symptoms. On the bright side, I am not suffering from extreme fatigue so there is that.
I tested negative for coeliacs twice! However had symptoms for years...in my case tremors was a primary one but not the only one. Finally got my self referred to the lead in the world Proff H, Sheffield and he did a mri scan and found damage typical of gluten sensitivity. He did special blood tests to check for allergy reaction (diff to coeliacs). Ive been on a strict gluten free diet for two years now. Am loads better but permenant damage has been done due to late disgnosis, as shown on scan /symptoms. If you have autoimmune conditions and there are other autoimmune conditions in your family its suspicious. Proff H said my brothers and sister should be checked for both as you can have this condition but not display typical or any symptoms until danage has occurred. I also carry the gene that 98% of coeliacs carry.
Am not saying this is you but I struggled for 15years before finally getting a diagnosis. Other consultants missed it which is often the case. Typically they just check their soecizkism so unless yoyr cibditiin falls wuth in tgat it gets missed.
Its worth bottoming given you already have an autoimmune condition.
I'm going to go gluten free anyway once I've had the test for coeliac disease but I feel if I do test positive then the people around me will take it a lot more seriously than if it's just seen as (more of?) Mum's fussy eating. If I don't test positive well we'll see how it goes. I might have to bring my own food to get togethers.
I'm glad you had a diagnosis in the end waveylines, it's hard to know what to do when you don't really know what's wrong with you isn't it.
Absolutely Souzy. You have all my sympathy. Apologies for the typos at the end of my last reply.
Its all a process of elimination thats what I learnt. To be honest I had to self diagnose.....then get referred to the correct specialist....lol.....so I didnt carry on bouncing round the system. So like you I did loads of reading and researching. Proff H commended me on my spot on diagnosis. 🤣
Am sure that all sounds sadly familiar to you....lol.. Dont give up! The answer will be in all that data you have somewhere. It might be what hasnt been assessed that ends up being the clue... xx
like waveylines i test negative for coeliac twice …twenty years apart …..ended up paying for private endoscopy….long story short …more on my profile
Yes having a piece of paper confirming gluten intolerance from consultant is ideal if you can get it ……otherwise many medics toll their eyes at “ latest fad of gluten free diet”
I had absolutely no obvious gut issues or symptoms but gluten free was astounding improvement
Magnesium was also the key supplement for me ….couldn’t tolerate vitamin D till had done a month on magnesium supplements first ….magnesium test was always “normal “
I've read through your profile twice and am full of admiration for you SlowDragon. I think, if I get any kind of pain from the vitamin D or if in 10 weeks it's not significantly improved then I will try a magnesium supplement.
Good point about medical professionals and an actual coeliac diagnosis too.
Hi Souzy gluten intolerance and coeliacs are two different conditions. If you look on Coeliac uk's website they explain both conditions. There is also a video from their last annual conference talking about it. Hope that helps.
Yes, they are definitely different conditions but unfortunate gluten sensitivity seems to be treated by a lot of people (and some who should know better) like it's some trendy hypochondriac illness. This is a huge shame imo.
TSH is not a thyroid hormone. It stands for thyroid stimulating hormone. The pituitary gland signals the thyroid to release hormones when it senses they are needed. The thyroid releases T4 and then through a conversion process where one cell of the hormone is removed, T3 is made. The pituitary and adrenal glands have a complicated relationship as well. Tumors on the pituitary are common, but rarely cancerous...but you should get a scan. Also...a more rounded nutrition plan would be a very good idea.
TSH is not a thyroid hormone. It stands for thyroid stimulating hormone. The pituitary gland signals the thyroid to release hormones when it senses they are needed.
Yes this is my original question. From the above I understood that if thyroid hormones go down, TSH goes up (to try and stimulate more hormone release) and if thyroid hormones go up then TSH goes down (because it needs to stimulate less thyroid hormone). But my TSH is going down while my T4 is steady (or even dropping a little) and I wondered why that would be.
The thyroid releases T4 and then through a conversion process where one cell of the hormone is removed, T3 is made. The pituitary and adrenal glands have a complicated relationship as well. Tumors on the pituitary are common, but rarely cancerous...but you should get a scan.
I asked for a scan last year but was told there was no point. I'll ask again though. Goodness knows I've had a bunch of scans for other things but they weren't interested in this one.
Also...a more rounded nutrition plan would be a very good idea.
I think I'm going to stick with the idea of trying gluten free and see if I feel better on it. If not then I might take out soy and the rest of the dairy I eat. I can always reintroduce things if it doesn't work. I think it's more genetic for me though, my mother had hypothyroidism which developed in her early 50s (my age now) and she ate a conventional meat and two veg diet for the whole of her life. Her mother (my grandmother) died at aged 58, my mum was very young so only knew it was a heart attack, no other details.
Do TSH and T4 have a relationship - if T4 goes down, TSH goes up?
I'm not sure if anyone actually answered your question.
Yes, you are right - in uncomplicated hypothyroidism, also known as underactive thyroid, when T4 goes down, TSH goes up.
T4 is produced by the thyroid alone, and TSH is produced by the pituitary in the brain. Both T4 and T3 affect the TSH level. The pituitary is "given its instructions" by the hypothalamus which is also in the brain. The hypothalamus responds to levels of T4 and T3 in the blood. And so the whole process is circular.
The other really, really important hormone is T3. About 20% of the body's supply of T3 comes from the thyroid. The remainder comes from other tissues in the body (gut, muscles, liver etc) by conversion of T4 to T3.
T4 is a storage hormone not an active hormone. It supplies the raw material for creating T3 which is the active hormone. Every single cell in the human body requires T3 to do its job properly.
T4 is so-called because it is made up of a Tyrosine molecule plus four iodine atoms. To convert T4 to T3 requires the body to strip off one of the iodine atoms from the T4. This is a part of the process that often goes wrong in people with thyroid disease - people can't do the conversion very well.
Another problem is that T4 and T3 are carried around the blood stream attached to transport proteins. See this link for more info :
In order for the body to make use of the thyroid hormones it has it must be separated from its transport proteins. And that is another place where things can go wrong - some people can't do that separation very well. Cortisol is involved in this separation of thyroid hormones from their transport proteins in some way, but I'm not sure how.
T4 attached to transport proteins is called Total T4.
T4 unattached (or unbound) to transport proteins is called Free T4.
T3 attached to transport proteins is called Total T3.
T3 unattached (or unbound) to transport proteins is called Free T3.
Free T4 and Free T3 are the actual versions of the thyroid hormones that tell you something about the patient's health. The Total T4 and Total T3 aren't very helpful tests.
Thank humanbean, that was indeed my original question but everyone offered some good information and I've some things to ask the endo next time I see him too, so it's been a useful thread to me.
Back in June 2021 my T4 was 16.0pmol/L (range 11 to 23) and my TSH level was 3.9mU/L (range 0.27 to 4.5). T3 was not tested despite being asked for by my surgery in July 2022 - the lab just said that TSH was in normal range so test was not available. My TSH has been steadily decreasing since while my T4 has held at 16. I got a private test in Aug so I could check out my T3.
Aug 2021
TSH was 1.21 (different lab so range was 0.27 to 4.2)
T4 was also lower at 14.6pmol/L (different lab so range was 12 to 22)
T3 was 4.07 pmol/L (3.1 to 6.8)
Being frank, maths is not my strong point so I maybe be wrong on this but leaving aside the fact that my TSH and T4 both seem to be going down, my T3:T4 ratio is 1:3.6 which seems pretty good? But all of my results are in the bottom half of the ranges which doesn't seem very good?
ETA all the results are free T3 and free T4. I've never had a total T4 test done.
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Can I decide whether to go up on meds with only a TSH reading (GP won't do T4, T3)?
Why have my hypo symptoms returned despite TSH dropping below range?
Low TSH, low T4, T3 top of scale. Do my meds need adjusting? 
New Bloods- Help to interpret! 
Up & Down! Up and Down!
