This is my first post, I’m hoping to get some support, advice and knowledge to help me understand what is going on in my body.
Please bear with me as I give some background - I have been seen for the past couple of years by endocrinologists after a pituitary macroadenoma was incidentally found during an MRI scan. This is monitored yearly and they now think it is just an enlargement of the gland, not a benign tumour, and possibly related to menopause. Bloods were taken at the time which suggested subclinical hypothyroidism, lab report was “TSH was abnormal at 0.08 but FT3 and FT4 both in euthyroid range”. My GP started me on 25mg levothyroxine, after 3 months further blood tests requested by the endo team came back normal and so they stopped the levo. I was disappointed as I had started to see a little improvement in my symptoms.
Symptoms - I was diagnosed with Coeliac Disease 5 years ago, I have been gluten free since then. I have B12 injections monthly. I constantly feel fatigued, have brain fog, forgetfulness, red/dry sore eyes, sore and aching joints (after sitting or lying for a period of time when I get up I ache so badly and everything hurts, my lower back hurts after walking for a short time), constantly have a cold numb sensation in both my ankles, mild pins and needles sensation, losing lots of hair, sweating, vary between unable to tolerate heat and cold, painful and sensitive swollen tongue, large cracks on my tongue and tastebuds look huge, so swollen that I now have teethmarks on the sides of my tongue, and weight gain, I’ve been gradually gaining weight over the past couple of years but this has increased recently to more rapid weight gain, just under a stone, mostly around my abdomen. These symptoms really get me down. I’ve recently started the 5:2 diet in the hope of gaining some control over my weight.
I have an endo appointment in mid October, I’m going to attach my latest blood tests as they include antibody tests, the endo mentioned in a letter to my GP that I have “transient abnormal thyroid function with incompletely suppressed TSH and normal T4”.
Thank you for bearing with me and I would be so grateful for any advice, explanations and possible questions for me to take to my next appointment.
Thank you.
I’ve not figured out how to add more than one photo, so my other blood results are:
Anti-TSH Receptor Ab 3.2 (normal range 0.0 - 0.4) IU/L
Free T3 4.8 (normal range 3.5 - 6.05) pmol.
And low Vit D 37.5.
Thank you.
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Yuki9
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So in a nutshell your results show you also have autoimmune hypothyroidism (edit: and possibly Graves) and all the classic symptoms to go with it, TSH is likely to be unreliable in your case due to the pituitary issue which would class you as central or secondary hypo as your pituitary isn't sending out the signal to make more thyroid hormone and you thyroid is under attack so probably unable to respond anyway 😕 this will be a bit over your GP's head I'm afraid as they only really look at TSH 🙄
Free T4 (fT4) 10.5 pmol/L (10 - 20) 5.0%
Free T3 (fT3) 4.8 pmol/L (3.5 - 6.05) 51.0%
TPA range is usually <34iu/ml
Your body is desperately making as much fT3 as it can to keep you functioning, so you would certainly feel better starting on T4
What you can do in the mean time is correct your Vit D (which being that you are deficient your GP should have prescribed some) this calculator is excellent, you are aiming for 100-150.... grassrootshealth.net/projec...
Do the antibody results indicate Hashimoto’s, Graves or both?? From my limited understanding and google searches it seems I have antibodies for both? Is that possible?
The last doctor I saw at the endo clinic was a consultant physician (not an endocrinologist). I’m not sure of the difference but I have been thinking of paying privately to see an endocrinologist as I feel they haven’t really taken my symptoms seriously. I did go back to GP who wouldn’t restart Levo as I’m under the endo team. Frustrating as it takes so long to see someone and when I don’t know what to ask I usually leave feeling dismissed and even more in the dark.
Thank you for the supplements advice, I’ll be ordering as soon as I finish this post😀 I have added my other results which has my folate on there. I have B12 injections monthly, I e been having these since my Coeliac diagnosis so my levels are always high but have never helped with fatigue and other symptoms.
Do you have any questions that I should be putting to whoever I see at my next appointment?
No worries, my Anti-TSH Receptor AB is somewhere between 3-3.5 (IU/L) the normal range given is 0.0 to 0.4. Serum folate is 7.8 (ug/l). Free T3is 4.7pmol/L normal range is 3.5-6.5 and Vit D 37.5, thank you.
I'm not sure but I think the anti TSH Receptor reading could be indicative of Graves Disease -
You can have Graves and Hashimoto's - both Auto Immune diseases - running at the same time - Graves is multi-organ and generally only picked up when the thyroid and or eyes are involved whereas Hashimoto's is ' just ' thyroid focused :
Treatment for Graves takes precedence and the treatment is with an Anti Thyroid drug - either Carbimazole or Propylthiouracil :
Low levels of the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D can compound your ill health further than necessary -
I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D up at around 125 :
I now am able to maintain my ferritin naturally through food - mostly through eating a chicken liver pate I make for myself every week which is basically around 200 grams of chicken livers flash fried in olive oil and whizzed down into a mush - and with the help of some Hellmans mayo - I have a spoonful each morning.
My level was down at 22 - and I found the NHS prescription for Ferrous Fumarate upset my stomach and offered no alternative I found an iron bisglycinate supplement kinder on my stomach - there are several brands to choose from - at the time I purchased Solgar Gentle Iron - and I also ate liver twice a week:
As detailed by GG - you need all the ' B s ' balanced -
I take Ingennus Super B complex - but if you are just looking to increase you folate maybe try a methofolate supplement -
As for vitamin D I take Doctor's Best D3 x 5000 iu - but initially put myself on 10,000 iu - you also need to take K2 -MK7 - to direct the vitamin D towards teeth and bones rather than heart and arteries - both these are ' soft gels ' suspended in extra virgin olive oil.
P.S, Yuki9
As far as I can see / understand read - your T4 is very low in the range at 10.50 and only just in the range - and your T3 is at 4.80 and around 51% through its range.
We function on the active hormone T3 - which is converted from T4 - which is a pro-hormone circulating in the blood that is converted by the body into T3 when the body dictates - with the brain and heart take the lions share of T3 -
the remaining T3 is used for the energy needed by every cell in the body everyday to tick the body over - to get you through the day and the more physical you are - the more energy expended - and the more T3 you'll need to use before becoming exhausted.
Currently you haven't enough T4 circulating in your blood to give you any more T3 and its a bit like being stuck in a gear - with not enough fuel in the tank to even change gear.
Does that make sense ?
I believe you'll likely be told you will be treated for Graves Disease - and the treatment is with an Anti Thyroid drug - Carbimazole or Propylthiouracil - and generally speaking the NHS treatment window with an AT drug is 15 -18 months and the hope is within that time frame your immune system calms back down again and your thyroid resets itself without the need for any drugs.
All the AT drug does is ' buy you time ' while we wait for your immune system response to calm down - and this ' blocking ' antibody circulating in your blood disappear.
Most commonly Graves is described as the patient being ' hyperthyroid ' and detailed by very high, over range T3 and T4 levels - and with the thyroid stimulating antibody basically in control of the TSH - pushing T3 and T4 levels higher and higher - and considered life threatening if not medicated.
Some with Graves experience either Blocking or Stimulating symptoms at any given time as these 2 extremes can interchange while they vie for control of the thyroid - and for some people these 2 extremes cancel/ burn each other out - leaving the patient feeling relatively ' normal ' .
Blocking TSH Receptor antibodies block both TSH and TSI from reacting with the receptor. This offers protection in patients with Graves Disease and contributes to hypothyroidism in patients with auto immune atrophic thyroiditis. ( quote from Elaine Moore elaine-moore.com )
I hope that makes some sense - I'm aware I'm editing something already sent - just jump in where I've printed your name.
It's an unfortunate name for a health issue - but was discovered by someone whose surname was Graves - it is not a death sentence - I'm still here and post RAI thyroid ablation back in 2005 - not that I'm recommended this treatment.
Thank you pennyannie, I think I’m beginning to understand, I do have to read things several times before they start to make sense. I often find myself describing my tiredness as “I’m running on empty” so your explanation rings true for me.
If, as you predict, I am treated with an AT drug, will my symptoms improve on that or will it be up to 18months until the drug has done its work?
I’m assuming you have Graves, hope you are well.
I have ordered B Complex, Vit D with K2-MK7 and gentle iron. Hoping I will notice some benefit soon.
I really appreciate your responses, thank you. This allows me to get myself better prepared for my next appointment, disappointingly I’ve had a message to say they’ve cancelled my appointment in October and I’m now waiting for another date.
Depending on the date I receive, I may look into a private appointment as I’m so keen to get moving on this.
Yes I too was running on empty - and the final straw that took me to the doctor was insomnia -
I had tried to sort myself out as all my life I'd been dismissed with anti depressants - but 1 hours sleep a night for 3 months took me to the doctor and 2 days later diagnosed Graves.
Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - and 3 months prior to diagnosis I had been verbally abused and physically threatened by a man I employed as my assistant manager.
Anyway - yes - well on the AT drug - Carbimazole and thought I was sorted - but told at my very first hospital appointment that I was to have RAI thyroid ablation the following year and back in 2004/5 knew nothing and simply trusted the mainstream medical.
I became more unwell some years on and that was when I started my research as my NHS doctor referred to me as a conundrum - and refused me any other treatment options -
so I now self medicate, source my own thyroid hormone replacement, run my own blood tests and am much improved as to how the NHS would have me be - if interested you can read anybody's thyroid journey by simply pressing the icon alongside their name in any reply they make and this takes you to their Profile page -
If you get lost reading around just press the Profile button sitting alongside Alerts-Post - Chat - My Hub icons top right facing me here on my little laptop - maybe in a different place on a different gizmo - and this will take you back to your Profile page and all you have ever written and all your replies - on this patient to patient open forum which I'm greatly indebted to in my journey back to better health.
Thyroid UK - the charity who support this forum hold a list of recommended thyroid specialists and endocrinologists - both NHS and Private - maybe email admin @ thyroiduk.org asking for a copy of the Patient recommended list of thyroid specialists -
There might be someone on there you might like the NHS to refer you to - or visit yourself privately - many specialists still offer video consults so distance need not be an issue - if just wanting to sounding board while you wait for the NHS appointment again.
Good morning and welcome to the forum, you’ve come to the right place.
I’m sorry I’m short on time, but, I just wanted to share the following link from a great source of information for all things thyroid related. There’s lots of useful information about antibodies. My daughter also tested positive for both Hashimoto’s and graves last year, which sent me into a tailspin as I was still trying to figure out my own diagnosis. She’s only ever presented as under active and is on Levothyroxine.
J972, do you have a link to the actual article that says Hashi's patients can have high TRAB levels but don't necessarily have Graves'? I find that site rather difficult to navigate, and finding the right article difficult. I did have the link but lost it in a recent computer crash.
So, Yuki9, you don't necessarily have both Graves' and Hashi's just because you have high TRAB. And looking at your results it's more likely to be just Hashi's, but with the complication of Secondary Hypo due to your pituitary problem. And, as TiggerMe says, that is far, far too complicated for a GP - probably for the majority of endos, too! So, you need to do your homework on Secondary Hypo to explain to the endo/GP why the TSH is totally unreliable in your case and they absolutely need to look at the FT4 and FT3.
You say you have monthly B12 injections, but do you also take a daily B complex? All the Bs work together and need to be kept balanced. And a lot of your symptoms do sound B12 related. So, most important to take a good B complex with B12 shots.
link to the page you asked for GG ("do you have a link to the actual article that says Hashi's patients can have high TRAB levels but don't necessarily have Graves'? I find that site rather difficult to navigate, and finding the right article difficult". )
academic.oup.com/cei/articl... Prevalence and clinical relevance of thyroid stimulating hormone receptor-blocking antibodies in autoimmune thyroid disease
T Diana, J Krause, P D Olivo, J König, M Kanitz, B Decallonne, G J Kahaly Author Notes
Clinical and Experimental Immunology, Volume 189, Issue 3, September 2017,
Sorry, I think I’ve replied on the wrong thread. Thank you for your reply.
I will do some more research on secondary hypo as you suggest. My endo has never actually said that the pituitary swelling is having an impact on my thyroid function.
Do you have a recommendation for a good B complex?
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