My ‘thyroid journey’ has been an interesting one and now approaching its 4th year. I’m fairly convinced I don’t have autoimmune thyroid disease and relatively confident my adrenals play a big part in my symptoms, however it’s not just adrenals as I’ve tested myself on HC solo and it doesn’t work. Aaanyway, after a round of Levo and T3, (approx 8 weeks) I felt absolutely awful, more hypo than when I started, so I stopped cold turkey. This test is 4 weeks after stopping, the 3rd week being when I really felt bad again. My TSH is the highest it’s ever been, it was always low without thyroid hormone as were the frees. After the test I started on metavive I and adrenaviveII x 1 each morning, lunchtime and tea-time, I’m already feeling better. I’ll continue with this and test again in a couple of months.
My testosterone is over-range and may be contributing to the better energy levels I have and more stable SHBG as it was undetectable last time I had it tested, I will now reduce my dose to fit ranges. I’ve also started oestrogen and progesterone low dose which I think has helped with brain fog and joint issues.
Overall, I know that these thyroid results are not optimal for me and will continue to supplement and test every 2 months to try and find that elusive sweet spot, if there even is such a thing!
Any advice on my tsh rising and if it would continue to rise without thyroid hormone be welcome as it was always low and I’m wondering if this pattern is indicative of a progressing pituitary problem.
Many thanks.
Proteins
ALBUMIN
35 - 50 R
43g/L
SHBG
27.1 - 128 R
55nmol/L
Thyroid Hormones
TSH
0.27 - 4.2 R
2.77mIU/L
FREE T3
3.1 - 6.8 R
4.8pmol/L
FREE THYROXINE
12 - 22 R
14.3pmol/L
Hormones
FSH
25.8 - 134.8 R
60.6IU/L
LH
7.7 - 58.5 R
38.8IU/L
OESTRADIOL
< 505 R
110pmol/L
TESTOSTERONE
0.101 - 1.42 R
4.35nmol/L
FREE ANDROGEN INDEX
0.2 - 7.1 R
7.9%
PROLACTIN
102 - 496 R
333mIU/L
Autoimmunity
THYROGLOBULIN ANTIBODIES
0 - 115 R
13.3kIU/L
THYROID PEROXIDASE ANTIBODIES
0 - 34 R
<9kIU/L
Written by
Jamima
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I’m fairly convinced I don’t have autoimmune thyroid disease and relatively confident my adrenals play a big part in my symptoms
Hi again. Have you ever tested positive for antibodies Jamima or was your diagnosis based on thyroid blood tests and symptoms?
Your TSH was low prior to treatment, what was said about that at the time? Does it point to central hypothyroidism do you think? And I notice that your FT3 was relatively high in range, certainly when compared with your FT4.
Your ferritin was woefully low 4 years ago, has this improved do you know?
I share your concerns about adrenals playing a big role in symptoms. I’m personally very interested in your decision to switch to metavive - am I right in thinking that you were previously on this?
Presumably you’ve been supplementing testosterone? May I ask what you’ve used and dosage? My testosterone is extremely low at the moment. I have testogel (Superdrug prescription) and have been taking a small, pea sized blob for a couple of weeks on my inner elbow area.
I’m afraid that I can’t comment on your query about TSH rising, especially given that it has a tendency to be on the low side. So much for ‘feeling better with a TSH around 1’, eh?
It’s such an infuriatingly complicated puzzle, isn’t it?
Hi J972 - I’m not a straightforward hypo, I’ve never had positive antibodies and was told by a variety of medics that my thyroid and adrenals were ‘normal’ despite being symptomatic for 4 years. I’ve given up on medics now and just self treat and test. Before my first thyroid test I’d had 3 years of unrelenting stress; partner who had a knee op every year for three years and I was the only carer, changing dressings, checking blood sugars (he was diabetic), looking after my sons and running 2 businesses. By the year of the first test I could feel the exhaustion taking hold, I increased my HRT but it made me feel worse, so I decreased it and I felt better. I continued to decrease, the relationship ended, I closed one of the businesses and I’ve not been the same since. I think it’s central hypo but no medic will diagnose me as I’m not far enough out of range. I’ve had my cortisol tested and it’s not Addison’s but it is low, increasing at night. I think it’s central based on: I can’t tolerate thyroid hormone without adrenal support, it makes me really ill, and hydrocortisone or adrenal glandular without thyroid hormone does the same. So I now self treat. I’ve tried Levo several times and I can’t tolerate it, even with adrenal support so I’ve gone back to glandular as they seem to be gentler and I prefer adrenavive to HC as I’m not comfortable taking HC without supervision long term. All my vits and iron are good now so that’s sorted and I’ve re-introduced low dose HRT as I think that’s part of the picture. My androgen index couldn’t be tested at one point as testosterone was undetectable so I’m really pleased it’s raised and imagine helping my adrenals has helped with that. I use a pea size blob of testim gel behind knee daily although I’ll stop for a couple of weeks and then restart maybe 3 days a week. I was prescribed the T years ago by a private gynae and he gave me almost a lifetime supply! I’m sure your T will rise if you supplement daily.
Yes, it’s an incredibly difficult puzzle given all the feedback loops/menopause/tbg/shbg etc, but I’m pleased with these results as it gives me a clearer idea of when I start to feel bad and that despite my TSH rising, my T4 doesn’t- another puzzle piece to work out!
You sound a lot like me, including the lack of a formal diagnosis. I should however add that my thyroid levels prior to treatment (I started off with metavive early last year) were more ‘conventional’ in terms of suggesting a thyroid issue (elevated TSH, low in range FT4). I once tested positive for TPO antibodies - by 1 point above range - which has led me to question my ‘thyroid status’. As an aside, my daughter was diagnosed with autoimmune hypothyroidism in the summer - her antibodies were 201 and her TSH was above range (she’s now on Levothyroxine) and I’m aware of a genetic component to this condition…..
Anyhoo, like you I’ve been repeatedly told by various GPs and others (never seen an endocrinologist) that I don’t don’t have a thyroid problem and it’s “either CFS or really bad menopause.” Most recently I was told that I should consider CBT for my “lack of diagnosis.” That GP also took relish in adding that ‘patient doesn’t believe in CFS’ on my notes. I’m of the opinion that CFS is a symptom, not a diagnosis. Exhaust all the possible, underlying causes for my myriad symptoms before you throw me on the scrap heap!
Like you, I believe that I have a number of things going on, quite probably all linked to my hormones. I’m 51 now and my health has deteriorated in the last 2-3 years.
I too experienced a protracted period of stress around 8 years ago. This centred around the traumatic breakdown of my relationship followed by the need to sell the much-loved family home. Big upheaval. In hindsight, my ex-partner was chronically ill for much of the relationship, still is, but we now know that he has B12 deficiency….extremely badly let down by mainstream medical profession. Fortunately we’re on really good terms.
I am post-menopausal and have experimented with different combinations of HRT. I keep coming back to the irrefutable fact that, up until just over a year ago, I was still very active even to the extent of playing my beloved hockey every Saturday (albeit struggling massively with recovery for the preceding two years).
I can fully appreciate that ageing will lead to some physical deterioration but I see people of my age and older enjoying life. It makes me really sad. I also have feelings of guilt from a parenting point of view: my girls are very understanding but it must be difficult for them having previously had such an active mum. They also have the double whammy of their dad being poorly.
I had my cortisol levels checked via Regenerus last November and, like you, my daytime levels were low/sub optimal and evening/night was elevated (which I was told is an often-seen pattern). I then requested a 9am serum test at the drs (“I think CBT would be just the ticket!” came the response….I’m obviously paraphrasing) and that came out at 380, with a cut off of 350. So not terribly low but I have read the NICE guidelines and anything less than 500 *should* be referred to endocrinology.
Recent private sex hormone test captured my testosterone at <0.087 (<0.1 Low), SHBG 118 (27.1-128 Optimal) which gave a Free Androgen Index of <0.07% (<9.19 Low).
I started on levo in August (self sourced) and added T3 in October (self sourced). I’m not reaping the benefits I thought I would. Perhaps I’m massively impatient? Not sure, difficult to distinguish between what might be ‘hypo symptoms’ and side effects from the treatment. I’m not convinced that this is the best route for me and, reading your post kind of reinforces that. Take care.
We are similar, I’ve also had the CFS diagnosis along with ‘all in your head’, ‘full HRT replacement will fix it’ and ‘excited blood’. Obviously anti depressants were offered on several occasions. Like you, I think CFS is a dustbin diagnosis for a collection of symptoms although I did read something recently about CFS being linked to RT3, but I’m not ready for that investigation. Like you, I don’t get the relief from thyroid meds that is supposed to happen and I do wonder if I need them. I’m leaning towards hypocortisalism and low sex hormones which I’ve also read is quite common. My oestrogen is still low, I’d like it up at 200 pmol. I’m 61 and post meno. I wonder if we’re the same in that respect - meno + stressful event + lowered cortisol. There’s absolutely no doubt that I felt like ‘me’ after my SST when my adrenals were artificially stimulated and I’ve never had the same results from thyroid hormone.
It’s been interesting to ‘meet’ you as I don’t seem to match with many on here and I wonder, like you, if it is thyroid? I know thyroid output is compromised by low cortisol but why do we have low cortisol, is it just menopause?
Sometimes it’s so frustrating and so saddening to ‘lose’ the person you were. I’m not giving up though. Thank you for your reply it’s been really helpful.
Your response triggered a memory of having a cortisol injection in my elbow early last year and feeling fantastic afterwards - that can’t be coincidental.
Is 200 pmol considered an optimal level for post menopausal women when on HRT?
I’m curious to know whether you’ve ever considered trying NDT?
Luckily it sounds like you’re a determined individual. I am too, for the most part. There are times when I feel really down and a little hopeless but fortunately that’s usually fleeting.
She’s doing ok thanks, has tolerated it really well. She’s currently on 75mcgs and was due a blood test this week but we cancelled it because she had Covid.
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