I have just signed up to ask for some advice, as I'm struggling with concentration, focus, memory and drive, among other things I suppose.
I was diagnosed with Pernicious Anaemia in 2005, after being rushed into MAU with suspected leukaemia. I've been on injections every 3 months since then. At the same time, they tested me for everything, and told me my thyroid was under-active. I was put on 25mcg, which was slowly upped to an eventual 200mcg per day, of levothyroxine.
I have been tested for addisons and type 1 diabetes which is apparently all clear. My Dad has addisons, underactive thyroid, B12 deff and type 1 diabetes, and so did his brother. His sister has hypothyroidism without the others.
I have some form of poly-glandular autoimmune problem which is hereditary, although I am the only one a generation down out of many children with any of these problems!
I am male, 33y, so was diagnosed when I was 24.
The problem I have is concentrating and remembering things. Some things I remember, others I have no recollection of. I also lack enthusiasm for lots of things, things I normally care about. I seem depressed at times, but I'm sure I'm not depressed. I have been put on SSRI's twice and have had cognitive behavioral therapy, but I'm not convinced I'm depressed.
My auntie, who I mention above, has suffered with hypothyroidism for decades, and over the last decade or so has struggled to even read an entire book. She explained to my Dad recently that she felt like she had a foggy head, and a hole whereby information she is taking in just falls straight out. She made many visits to a doctor and got referred to an Endo, who put her on some T3 medication. They had to work on it for some months, but she said that she is much better for it now.
Basically, the way she explained her problems is exactly how I feel (apart from she would also fall asleep very easily, a problem I don't have).
I have asked my doctor when having bloods taken to tell me what my T3 is, and they say they can't test me for it; they only check my TSH. My GP says my TSH is fine, and is in the middle of the marker, and that means that I am getting enough thyroxine. When I challenge this with wanting more information, I am told that the TSH marker would indicate that I am getting enough T4, which naturally brings up the T3 levels to, so it must be ok.
Maybe I am looking for excuses for my memory and concentration, but my relationship is struggling because of it, and I can't get my job done efficiently like I used to, even though I know what needs to be done. I can't explain this very well, but I feel like I have a foggy head when I am meant to be concentrating, and when people talk to me I kind of drift off and think about something they have said, or something entirely different, resulting in my just nodding at them but not recalling what they are saying.
Any advice, if any of this makes sense? I've been so blasé about all of this, and taken it at face value, trusting what I'm given. Grew up with my Dad who never appeared to have any problems, but he covered it all up I suppose and never talks about his problems, so just take the tablets I'm given. I've even gone weeks before without taking them, because they didn't make me feel any different. It wasn't long before I started getting weird electric shocks going through my face and arms that I realised that I had forgotten them...won't be doing that again, I can assure you!
Thanks for reading if you got this far, and I hope someone will understand what I'm getting at, and able to offer some constructive advise.
Regards, V.
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VB_Aylesbury
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Quick questions: are you taking any B12? do you know what were your b12 blood levels?
Both hypothyroidism and B12 deficiencies can be responsible for the way you currently feel. Indeed, you are not depressed.
An additional challenge to take to your GP..yes, you may be having adequate T4 but is your thyroid converting T4 into T3? In order to do so, you need optimal levels of many vitamins and minerals mainly iron/ferritin, selenium, zinc, B2. Have they tested you? Are you supplementing?
Being halfway in the normal range isn't the same as optimal. Ask your GP receptionist or practice manager for a print out of your most recent thyroid results with the lab ref ranges (the figures in brackets after your results) and post them in a new question and members will advise whether you are optimally medicated.
Your GP is quite wrong to say that TSH in range means FT4 is good or that T4 to T3 conversion is good. FT4 and FT3 tests determine how well those functions are. TSH measurement is worthless in people with pituitary dysfunction, and people with impaired DIO2 gene aren't able to convert T4 to T3. It would be worth ordering private FT4 and FT3 tests from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin... You can post the results for interpretation and advice.
If your FT4 is good but your FT3 is low, you may not be converting well and may need the addition of Liothyronine (T3) to a reduced dose of Levothyroxine (T4).
TSH of people on medication is usually comfortable just above or below 1.0. Scroll down to Guidelines and Treatment Options to read Dr. A. Toft's comments in Pulse Magazine thyroiduk.org.uk/tuk/about_...
If you want a copy of the article to show your GP email louise.warvill@thyroiduk.org.uk
Ask your GP to test ferritin and vitamin D as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
So much to read and learn I'm afraid. If you go over to the PAS forum on HU you will read of many serious cases of neglect. Docs do not seem to understand the seriousness of PA.
Injecting every 3 months is a cost cutting exercise - as it used to be monthly - then reduced to two-monthly - think you get my drift .... Amazing really as B12 injections are so inexpensive unless the NHS are being ripped off again as they are with T3 tabs. I bought 24 phials here in Crete for under 20 euro today for someone to take back to the UK. We can buy over the counter without prescription. There is a campaign currently running at the moment for the same to happen in the UK - sign on....
b12d.org It's on the Menu on the Left of the page....
You may have a problem with converting the T4 tablet into the ACTIVE hormone T3 - and that is why it is important to have a FT3 result. Your Doc is obviously not aware of this fact or is it costs again. Just to put the ball back in their court the next time you ask for any tests offer to pay for the FT3 as it will work out cheaper that way. There is a Gene - D102 - that prevents good conversion of T4 into T3. There is test for this available and detailed on the main Thyroid UK website. The TSH tells your thyroid to produce T4 and that has to convert into T3 - so don't know what your Doc means by saying as your TSH is mid-range you will be producing enough - find another GP.
You also need good levels of Ferritin - Folate - Iron - VitD to feel well. Were you to told to take Folic Acid with your injections ? - they work together in the body and bind to the B12 enabling it to remain longer in the body.
Am not a medical person - just someone who has weekly B12 injections....
Thank you so much for all of your prompt replies. I have a telephone appointment with my doctor on Friday, and I am going to request that I have samples taken for what I can detailed above, and try for the FT3 test too. If I can't get the FT3 on NHS, I will offer to pay, or go privately.
A wealth of information there to read through, and surprised at how much I could attribute to my issues.
I have some results from last year, but that is all I have to hand. They are a bit strange, as it shows my B12 as too high...
Serum Vit B12= >2000pg/mL (187 - 883)
Serum folate = 3.6ng/mL (3.1 - 20.5)
Serum ferritin = 14ng/mL (22 - 275nh/mL)
Serum transferrin = 3.29 g/L (2 - 3.2)
Serum iron level = 27.1umol/L (5.5 - 25.8)
Transferrin saturation index 32%
Serum TSH level (CK) Normal = 1.23 (0.35 - 4.94mlU/L)
Once I have new test results, I will start a new thread.
Why would the B12 be so high? I was never told this. The only thing that has ever happened in the last few years following a blood test, is levo upped, and last year I was given iron tablets which made my guts feel awful!
Folate and ferritin very low and B12 is excreted so can't overdose on that. My TSH Is very low and my FT4 high but my FT3 just under half the range. I'm now taking Vit D, Zinc, Selenium, B12, B Complex Folic Acid and Magnesium Citrate and feeling much better. Thyroid problem make us low in such things and they are important to help conversion of T4 to T3.
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