Hi , new here so hope I've posted this correctly! I'd be extremely grateful for ANY advice/opinion/input! In a nutshell I have been poorly since my son was born three years ago, I am 40 years old, doctors are not much help and I'm getting worse, daily symptoms include - Muscle weakness (feeling like my blood pressure drops) pain in limbs, awful night sweats, hormone problems, extreme tiredness (getting worse) reoccurring infections (chest and bladder or kidney) mystery hospital admissions that always end in me been given a lot of IV fluids, weight loss but hungry all the time, salt cravings, daily migraines and low iron. The reason I'm questioning thyroid problems is because both my aunt and cousin have under active thyroids (and I'm clutching at straws now!!)
An average blood result for me is
SERUM FERRITIN 10ugL. (20.00-291.00ugL)
RBC 3.93/L. (4.20-54010/L)
HAEMATOCRIT 0.357 L/L. (0.37-0.47L/L)
TSH 1.0mu/L (0.55-4.80mu/L)
SERUM FREE T4 11pmol/L. (9.00-23pmol/L)
I was given ferrous Fumarate for my low iron which helps ease my limb pain, but I'm not any the wiser as to what could be causing all other my daily symptoms or why I'm iron deficient (As you can see my thyroid tests are 'within range' but just wanted to check. Thank you very much in advance 😊
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CandiR
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Join the ThyroidUK forum here on HU for lots of expertise.
But here are my thoughts to start you off.
Your TSH is 1.0 which is pretty well optimal. Free T4 is very low in range, so for your TSH to be so good it would suggest that you are VERY efficient at converting T4 to the active hormone T3. But really only a test for Free T3 (FT3) will tell because you could, although its rare, be hypothyroid because you aren't producing enough TSH to get your hormones up to a decent level.
For thyroid hormones to work properly you need other things to be optimal. The important things are Ferritin, Folate B12 and D. Your ferritin being so low is by itself enough to cause what look like hypothyroid symptoms. You should get the other things tested if they haven't been already. All should be mid range, and B12 over 500. I assume that since you are on the PA forum you have B12 problems?
You probably know that both Blue Horizon Medicals and Medicheck do home blood testing kits if your GP is unhelpful, and sadly many are.
Thank you very much Ruthi, really appreciate your input, definitely an interesting and helpful read, especially regarding the test results, I'm going to request a 'proper thyroid blood test' from my GP on Thursday this week and, as you mentioned ask for my T3 to be checked (as they have never offered me that in the past) I'm currently self injecting B12 (with B12d.org, Dr Chandys advice) I try to help myself as much as possible but nothing seems to help me unfortunately (thanks again for your help!)
Here in the US the proper thyroid tests are referred to as a "thyroid cascade." I'm not sure if the terminology would be the same in the UK, but you're looking for a test that will show you T4, free T3 and reverse T3. Reverse T3 is particularly informative; reverse T3 is T3 that's been converted into a T3 blocker, and it can point you in some very productive directions.
In the meantime, you might trying raising your levels of all the B vitamins, particularly B6/p5p, thiamine/benfotiamine, riboflavin and niacinamide (or niacin, which is available in a very active form as Niacel or Niagen). Those are all best taken together in the morning. Thiamine and riboflavin doses can be very high, and they're usually 100-400mg/day or more. B6 daily dose you should keep to 50-100mg/day. Niacel should be in the 125-250mg dose, and niacinamide in the 100-200mg/day dose. Take all of those in the morning, separate from your b12 by a few hours if you can.
I say that because very often anemia can be specifically tied to something like B12 or iron, but when the other B vitamins are deficient they can function as a rate limiter - so you can flood yourself with iron, but it won't get turned into red blood cells because there's not enough b3, for example, so it gets dropped into the liver. You don't need to take these therapeutically for decades; just try a week or two and see how you feel. I find since I started the thiamine in particular that I notice when I'm low on thiamine.
And good luck. I have a very similar cluster of symptoms. You can make yourself feel better.
Thank you edgrover, do you suffer with thyroid issues? that's great information, especially about the "you could flood yourself with iron but it won't get turned into red blood cells because there's not enough B3" I always say to my GP that just iron tablets alone is not going to be enough, and I think my blood test results would suggest this theory perhaps.
In regards to thyroid issues, is the US 'range' different to the UKs? Or is it pretty similar?
I realized the difference in ranges of different conditions when researching B12 deficiency, for example, here in the UK I'm 'within range' but yet in other European countries I'm classed as deficient (hence my self injecting)
Thank you for your educated information, it really is appreciated!
I do have thyroid issues. Both PA and hypothyroidism are classed as "autoimmune" disorders, separate in their history and distinct in their diagnosis, and so I'm considered very unlucky to have two different autoimmune disorders. But without B12 your T4 to T3 conversion won't happen properly; and without T3, your body won't make use of all the B12 its got to make small and dense red blood cells; and iron deficiency has similar relationships with both T3 and b12. And iron deficiency will make B12 therapy less effective, for example. So deficiencies in the one can cause deficiencies in the others, and even though people are encouraged to think that there's this one neat trick that will make them feel better, there's usually a handful of root causes underlying all of the deficiencies.
You can spend your whole life trying to figure out the root cause. Some primary care doctors will look but many won't. In any event, your body is an ecosystem. Take natural forms of iron, try to ensure your t4-t3 conversion is as easy as possible with e.g. selenomethionine (and get t4 or even t3 medications if you can), flood yourself with a form of b12 you can handle, and make sure all the other cofactors are plentiful (like the other B vitamins), and you'll see benefits. And pay attention to your body: If thiamine makes you feel awful, even though I said it makes me feel better, then don't take it.
One cofactor is exercise btw - you have to push your body to make changes, which includes making new stocks of hormones and cells. That doesn't mean you need to run a marathon, but as a human being you need to move. Another cofactor is diet: If the root cause of your autoimmunity is exogenous - and it almost always is - then continuing to eat stuff you're allergic to will just perpetuate the problem. That's not to say that not eating e.g. gluten will make the autoimmunity go away, but you don't want to make things worse.
Thank you once again edgrover, a whole lot of valuable information there, much appreciated. I visited a GP again today, mixed feelings, didn't fill me with confidence, I asked to repeat a thyroid test, my last one was 18 months ago, I also requested (politely) if they'd add T3 this time instead of the usual TSH and T4, but was told basically it's not needed and even specialists rarely did this!?! So I think I can take that as a no. BUT they are repeating TSH and T4, but I was under the impression T3 was quite relevant..??
T3 and rT3 are quite relevant. Have you read Elle Russ's book? Its available on Amazon as an ebook, and its the best explanation of how all of this works that I've found. Some of her personal story may be a hard slog, but she presents the science in a very clear and simple way. Its a quick read and by-and-large you can get what you need in a couple of hours.
That said, don't feel bad that you can't get your GP to run the test. I've had this stupid condition for 30 years, and I've only been tested for antibodies by accident, and only had a full thyroid cascade a few times. And that data is mostly because I paid a consultant to tell me why I couldn't run as fast as my wife, and he had me do a bunch of blood tests. Most GPs don't know more about hypothyroidism than they've read in their textbook, and the fact that in 30 years I've heard near-verbatim explanations of what I needed from them is a sign of how superficial the knowledge is.
So what do I recommend? Test yourself, or find a functional medicine practitioner who will order them. In the US and Canada you can now sign up for your own diagnostic tests through e.g. Quest or LabCorp. You pay the same cost as what you would if your doctor ordered it, but they send the results directly to you. It looks like you can do the same thing in the UK:
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