Hi, I've recently been given a referral letter by my GP to take to an endo and the comments and blood test results are as follows:
"Her bloods, despite good compliance are a bit worrying. Her TSH looks very suppressed with just about normal ft4. She has been getting headaches, so I have asked her to do an eye test. I think we may need to consider a pituitary cause here."
Blood test results are:
! Erythrocyte sedimentation rate - 16
! Serum TSH level - 0.05
Serum free T4 level - 12.9
Serum 25-HO vit D3 level - 50
Everything else looks normal
I have been feeling really tired and generally under the weather for a few months now and have been getting headaches but they are more constant now and I am feeling dizzy, unbalanced and keep forgetting things. I have also had a bad neck ache and lower back ache but don't know if these are in anyway connected. I'm feeling particularly bad this week but I don't know if it's subconscious because I have had the above results back.
I have been on 125mg levothyroxine for the last 3 years and also take vitamin D tablets.
I am going to see an endo soon but in the meantime I'd be grateful for any comments on the above and if you think that this does sound like a pituitary problem or something else.
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Bonnie2014
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Have you got the ranges, please? We always need the ranges.
By 'normal', you doctor just means 'in range'. But, that's not the same as optimal. And yours looks as if it might be rather low. Which means that your FT3 would also be rather low, causing symptoms.
The TSH is totally irrelevant once you are on thyroid hormone replacement - unless it goes high. It does not matter how low it goes. But, yours has gone low BECAUSE you are on thyroid hormone replacement - even though that placement is too low. I very much doubt it has anything to do with the pituitary. What was your TSH when you were diagnosed?
Bonnie, of your D3 is prescribed it won't be enough. Clutter has suggested how much to take. Also, check the cofactors and supplement with those as well.
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B12 and folate may be in range, therefore 'normal', but they're not optimal which is what we Hypos need.
B12 under 500 can cause neurological problems (unbalanced/dizzy??) and the recommended level is very top of range, even 900-1000. You can buy some sublingual methylcobalamin lozenges 5000mcg, take one daily until the bottle is finished then buy some 1000mcg dose as maintenance. Also, a B Complex is needed when taking B12 and if you get one with 400mcg methylfolate that will take care of your low folate level should be at least half way through it's range (so around 12+ with that range).
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Ferritin needs to be at least 70 for thyroid hormone to work properly, recommended is half way through it's range, and I've seen for females it should be 100-130. You could buy some iron tablets and take each one with 1000mg Vit C to aid absorption and help prevent constipation. Iron must be taken four hours away from thyroid meds and two hours away from any other medication and supplements as it affects their absorption.
The easiest way to raise ferritin, with the least fuss about timing with other meds/supplements, is to eat liver regularly, no more than 200g a week, either as a meal or included in other meat dishes such as casseroles, cottage pie, curry, etc.
Thank you for all of your comments, it sounds like I am low in everything. I will definitely start taking the vitamins that you have suggested and see if it makes any difference.
Do you have the lab ref range for FT4 (the figures in brackets after the result) and do you know what your TSH was when you where first diagnosed?
Secondary hypothyroidism (due to pituitary dysfunction) usually presents with low-normal TSH and low FT4 at diagnosis. If your TSH was high when you were diagnosed you have primary hypothyroidism and your TSH is suppressed by the 125mcg Levothyroxine you are taking.
If FT4 is low in range you need more Levothyroxine even if it suppresses your TSH further. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
VitD 50 is insufficient. Vit D is replete 75 - 200 and most people are comfortable around 100. I would supplement 5,000iu D3 daily and retest in 3-4 months. Take vitD 4 hours away from Levothyroxine.
ESR is a non-specific inflammatory marker indicating inflammation or infection somewhere in the body. Did your GP do a full blood count to rule out infection?
My TSH was 81 when I was diagnosed, I was very poorly but because I had just had a baby it was blamed on that at first. I'm feeling ill again like I did when I was first diagnosed. Could it be that I am not converting the T4 properly?
Yes my doctor did a full blood count and everything else looked normal.
You most definitely had primary hypothyroidism to have TSH 81 and a very efficiently functioning pituitary gland. As I said, it is the Levothyroxine which is suppressing your TSH but one would expect your FT4 to be higher on 125mcg.
Your FT4 is so low there isn't much to convert so it is very likely your FT3 is low. T3 is the active thyroid hormone so having low FT3 can make you feel very unwell. You can order private thyroid tests including FT3 via thyroiduk.org.uk/tuk/testin...
Hi Bonnie - I too was diagnosed after having a baby (although I now realise that I had thyroid problems before that). It was 12 years before I started to do my own research and discovered all the controversy around TSH tests. i had never felt that well on Levi but GP always said tests were all normal. i suffered from very regular disabling headaches, unbelievably heavy periods, and general fatigue - I couldn't get through a day without a sleep.
I paid for a private blood test with blue horizon and discovered a very low ferritin level - I notice yours while in range is at the bottom end & the range is enormous - having taken the test results to my GP she prescribed iron tablets which almost instantly stopped the headaches and heavy periods, & PMS, as soon as I ran out the headaches came back.
After this I also decided to try NDT (natural desiccated thyroid) - I've had to do this alone as my GP does not know about it or approve - but I have felt SO much better since switching. You may not want to do this but it may be something the endo would discuss with you (some seem ok with it, some not!)
Hi Raucous - I too exactly the same symptoms as you are describing. Did you have a neck ache? The head and neck are the things that are worrying me most.
NDT isn't licensed for UK use so it is rarely prescribed on the NHS. Most members using NDT have private prescriptions or buy online and self medicate.
Somebody posted a list of GP surgeries prescribing Armour &/or T3, I was surprised how many there were, though they usually only had 1 patient on it. It may be out of date now & but do you know if it was on here or from ThyroidUK?
It's possible that you have a pituitary problem, but your bloods just show that you are not on enough levo to get your free T4 to a good enough level to make you feel well. The symptoms you report are common hypo symptoms.
It would be useful to know your free T3, B12, ferritin and folate, as the symptoms of low levels of those are very similar to what you have. Headache and low back ache can also be caused by low cortisol. Do you also suffer from loss of appetite or nausea?
You really need a FT3 reading to see what your conversation is like and it's only possible to do that when on Levo. Once you add in any form of T3 then you have to read the results differently and it won't show you have a conversion problem.
That can be improved by taking supplements so hence the testing of Vit D, B-2, folate and ferritin. I got my conversion almost correct by supplement but it doesn't happen overnight, can be months not weeks but we all react differently so I expect time can be variable.
I would suggest that you get any conversion sorted before you think about changing meds. For a start you may then find you don't need to. But if you change meds you may get an initial 'lift' but at the end of the day you still aren't converting so you will continue to have that problem on NDT as still got T4 to convert to T3
That's a good point Silverfox - can you remind me what the balance is between FT4 & FT3 is that shows you are converting well enough?
I have been on NDT for about 8 months now because my GP wouldn't increase my levo dose, but found I had to keep upping it because I felt great, then gradually went down again (hard to know when to increase or not) now I think I should do another blood test to see if I'm on the right road.
You can't really work it out now you are on NDT asxtge only accurate reading now is FT3 but if you have a result when on Levo then your FT4 and FT3 should be high in their ranges as you would be aiming to get them in the top third or even top quarter but if you has a high FT4 and a low FT3 then you aren't converting enough of the T4 into useable T3. If both were equally low then you would have need more medication.
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