in March I thought I was getting rheumatoid arthritis as my wrist joints were swollen and painful, blood tests showed severe vit d deficient so have had high strength prescribed, joint pain improved. Then I started feeling very tired and cranky doing less and less and having to push myself to keep going but felt there was no fuel in the tank when I pressed the accelerator. Limped on till I had an episode of muscle cramping so extreme I was unable to move for about 4 hours, couldn’t speak. Saw gp, blood showed very low b12 this time, so got loading injections, not much improvement and kept getting episodes of overwhelming fatigue, cramps, at one point admitted as it looked like a stroke, lost use of left arm and speech slurring. All scans are fine, neurologist appt no conclusions, I have been injecting b12 as gp surgery have said 3 monthly is all I need but am still symptomatic, some improvement but daily weakness, etc. I got my thyroid done privately again as it was normal in August (Tsh 2.8 or thereabouts ) but due to family history I was suspicious. Latest tests this week show Tsh higher. Also I’m bumping along the bottom of freet4/t3 . Results below.
Any views on results/when to test again/ what to ask gp/ whether my symptoms are thyroid or b12 or d or a mixture? Is it too early to ask fro a trial on Levo? Have had borderline Tsh in past during my thirties endless hormone problems, early meno, ovaries removed due to large cysts so am bit of a wreck but would like to get back to work!
Posting results again to see more replies hopefully thanks!
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Mag999
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Would suspect your cortisol is high as adrenals are trying to compensate for lack of thyroid hormones.
Ft4 is low
Ft3 is very low
What’s your diet like?
Vitamins need improving
Folate is too low
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Retest thyroid levels in another 2-3 months....once vitamins are optimal
Make sure to get bloods tested as early as possible in morning before eating or drinking anything other than water
cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
Thanks for your comprehensive reply, I will work my way through it as there are definitely lots of things there I am not on top of. What would scan of thyroid show and is that something my gp will do or is that privately available?
Kind of the same here. I had pins and needles in both hands & forearms, so they suspected hypothyroid & my TSH came back high! It’s a sorry state when GPs just rely on TSH results and don’t look at other things.
I tested negative for if, but then lots of people have said you can still have problems absorbing b12, I have tried tablets but my symptoms keep increasing so will go back to self injecting I think.
Saw gp, blood showed very low b12 this time, so got loading injections, not much improvement and kept getting episodes of overwhelming fatigue, cramps, at one point admitted as it looked like a stroke, lost use of left arm and speech slurring.
One thing I've read is that people with low B12 tend to be very low in red blood cells. When someone starts fixing their B12 levels either with supplements or injections the body goes into a frenzy of red blood cell making.
One of the minerals required to help make red blood cells is potassium, and that can run low when loads of red blood cells are being made.
Check the symptoms of hypokalemia on the above link. You can decide whether they fit your symptoms or not. I wondered if this fit your "stroke-like" symptoms - it is one of the adverse effects of severe hypokalemia :
I always keep a potassium supplement in stock although I only take it when my heart is misbehaving and/or I develop cramp. What I bought is this one - potassium bicarbonate :
This quantity will probably be enough for at least the next five years. I only take a level quarter teaspoon in water when I need it rather than every day, and I always use a proper measuring spoon.
For more info on potassium this is a very interesting link, including the comments :
With a reference range for folate of 8.83 - 60.8 the optimal level for folate is upper half of the reference range i.e. approx 35 - 61 going with the range provided on your results, so your result is too low.
Your vitamin D level of 64 nmol/L is too low. Optimal is usually given as either 125 nmol/L or 100 - 150 nmol/L, although some people are fine with it being lower.
To work out how much vitamin D3 you need you should use this link to do the calculation for you :
Taking vitamin D supplements should raise your absorption of calcium from your diet. You want that calcium to go into your bones and teeth, you don't want it lining your arteries. To help achieve that you need good levels of magnesium and vitamin K2.
...
Magnesium testing is pointless. Only about 1% of the body's magnesium is found in the blood. The remaining 99% is found elsewhere in the body.
The level of magnesium in the blood is quite tightly controlled. If it runs a bit low the body moves magnesium from other tissues into the blood. As a result people rarely show low levels of magnesium in blood tests - but they could still be deficient in other tissues.
If people supplement magnesium and take more than they need the excess will be excreted via the kidneys - as long as their kidneys function properly.
Someone with kidney disease shouldn't take magnesium except under medical supervision.
The normal dose of magnesium that people supplement is roughly 250mg - 400mg per day.
For info on the various kinds of magnesium supplements there are (they aren't all the same and some are better than others) see these links :
I did manage to get to 150 but then worried it might go too high so reduced supplements but it has dropped off very quickly, I work outside so never thought I was a candidate for deficiency but I assume it is part of the picture for failing thyroid?
I think low vitamin D is extremely common for everyone, with or without thyroid disease. I have read that vitamin D is made in the skin but it takes a while to penetrate into all the nooks and crannies. I've also read that showering daily probably cuts vitamin D levels.
Personally, I prefer to shower regularly and take a vitamin D supplement.
The optimal level for ferritin for many people is around mid-range or a little bit higher.
Iron umol/L 18.6 (5.8 - 34.5) 45% thru range - too low. Optimal is approx 21.6 - 25.9
Ferritin ug/L 47.2 (13 - 150) 25% thru range - too low. Optimal is approx 82 - 120
Transferrin Saturation % 30.7 (20 - 50) - too low. Optimal is 35% - 45%
TIBC umol/L 60.5 (45 - 72) 57% thru range - A little bit above mid-range, but not by much, so this isn't too bad.
None of your results above are desperately bad. You might find that you can improve your results by eating a diet which has good levels of iron in it. For advice on this, see this website :
Those results are better than my August ones, but I only halfheartedly supplemented as my haemoglobin was normal which is amazing for me so I didn’t understand why my gp was saying I was anaemia. Am vegetarian and do eat all the vegetarian options for iron but may need to supplement
The person I was replying to had a far more severe iron problem than you, so be very, very careful if you choose to supplement. I wrote a thread on iron and the problems associated with supplementing it here - please read it and all the replies too :
Hi im not a doctor but all your symptoms are and was the same as mine before I was diagnosed with having adrenal insufficiency? My life became 0 because I just slowed down that much..I went to the doctor asking them to check my collergen levels, he laughed and said they can not do that but I can refere you to see an endocrene specialist. Any how she was very understanding and explained that I could have a test done for Addisons...id never heard of it but I have it and I started taking steroids now for the rest of my life , ..my point is Ask to be referred to a ENDOCRINE SPECIALIST for a second opinion...good luck.
Thanks I hadn’t thought of addisons. My cortisol is high and the doctor recommended a 24 hour sampling so that might clarify, with addisons I think your cortisol is low all the time?
Yes lots of foods now give me indigestion, acid reflux, stuff I used to eat with no problem, put it down to getting older but now suspect it’s all related. I’m glad you found endocrinologist helpful, have heard mixed reports of peoples experience, but won’t rule it out. Referrals to nhs specialists v slow
Yes they can be but we pay our taxes? ...i had my thyroid removed because of a goiter which is the start to a autoimune disease , iv had cysts removals most my life and problems with adrenal ? Like if I go to dentist I d cry...My lack of energy got so weak it slowed my heart down..untill one day I had the adrdnal crash...please keep insomuch and let me know your outcome , ..i have a yeast free, gluton free and now a lactose free diet , i am awaiting to go see a dietitian over it all..really is depressing 😕..good luck. Kk
Thanks to you I’ve just been reading more about cortisol and I take your point that I need to keep an eye on it, I understand a bit more so will talk to gp about it. Sorry to hear you have had such an awful time, I hope you get support to recover and appreciate your reply, will let you know how I get on!
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