Hello! I am currently on no medication. I have been working on iron and got ferritin from 6 to 52 in the last year. I feel better but far from ideal. There’s lots of results below, I hope its helpful and not tmi.
Question 1: should I give these latest results to gp? I’m reluctant as he deemed my fatigue symptoms as depression. I only have mood issues before period. I’m nearly 40 and been trying to conceive for a few years now.
Question 2: do I have a thyroid problem or is something messed up elsewhere in HPA axis?
Symptoms: low energy (varies greatly throughout cycle), puffy eyelids, massive scallop edged tongue, side of head hair thinning, mid cycle bleeding, infertility, 25 pound weight gain in less than a year (previously obese but lost a lot several years ago).
You need to see your GP and ask for Levothyroxine. You are subclinically hypothyroid ie TSH is between 5 - 10 but FT4 and FT3 are within normal range. This will explain your fatigue, weight gain, scalloped tongue, hairloss, low mood and may be why you've failed to conceive recently. Results were euthyroid (normal) in 2016 but thyroid was struggling to have TSH 2.69.
Print off the NICE guidance and BTA statement below to show your GP. TSH of women planning conception needs to be in the low-normal range 0.4 - 2.5. Conception can be difficult when TSH is high and if pregnancy is achieved having TSH >2.5 increases the risks of miscarriage and poor foetal development. Levothyroxine dose is usually increased by 25-50mcg as soon as pregnancy is confirmed to ensure good foetal development.
Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee
The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).
Thyroid peroxidase and thyroglobulin antibodies are negative for autoimmune thyroiditis (Hashimoto's) and TSH Receptor is negative for Graves Disease.
B12, folate and vitamin D are optimal but you will need to supplement 1,000 - 2,000iu D3 daily Oct-April to maintain vitD levels. VitD must be taken 4 hours away from Levothyroxine. I believe it is recommended that folic acid is supplemented several months prior to conception and throughout pregnancy to prevent neural tube defects in the foetus.
Zinc and magnesium look fine.
Ferritin is deficient which can indicate iron deficiency anaemia which also causes fatigue. Ask your GP to do a full iron panel and a full blood count. You will almost certainly need to supplement iron 3 x daily and this must also be taken 4 hours away from Levothyroxine. Taking 1,000mcg vitamin C with each iron tablet will aid absorption and minimise constipation.
Thanks again, i've posted an update at the bottom of this thread, i hope thats ok. If a new thread is better, i will action that.
I tried my best with the new GP but i really screwed up and didn't have the documents printed. I'm sorry I hope you do not feel I've wasted your time. Drama and printer issues not ignoring your great instructions.
I understand if you feel i have all the information required.
I feel like I'd rather do anything than the GP option. He did give me an iron prescription in february after nhs test came back ferritin 9 and haemoglobin 119. But was so insistent I took antidepressants.... no!
I've got the ferritin up to 52, so not far off ideal i think, it was 23 in april. I'll order another medichecks iron panel.
I have some NDT, do you think I could start that? I have noted you've stated t4/t3 therapy isn't recommended in pregancy. But to be honest I don't know if that will ever happen, its been so long. About 4 years.
I'm off to delve into the links youve give me, apologies if they answer the above.
Try to find a new GP who knows something about thyroid conditions. When you concieve you'll need their help for blood tests to stay in the right range. Just be firm about not needing anti-D's. Maybe the surgeries get money for prescribing or maybe it ticks an NHS box? Docs have probs tried to persuade most of us we need them rather than take the time to unravel thyroid imbalance.
Thanks! Its good advice. I've got super low cortisol from a recent 4 point saliva test. So anything that could be a bit stressful is so impactful. I'll garner energy somehow and sort it. Thanks again ☺
Tell him you've joined the NHS recommendation for information/treatment about dysfunctions of the thyroid gland Healthunlocked Thyroiduk.org.uk in order to learn how to improve your clinical symptoms and you have been given, initially, these print-outs.
Yeah that sounds good. I've got back up! I always feel humiliated when I go, but that needs to change as I'll need to work with them if I do get preggo.
Try to avoid single GP medical practices. In theory GPs are suppose to talk to each other when they have patients with difficult conditions. In practice it is only the more junior medical practitioners who bother.
Actually it is best to change practices asap. The longer you are with one practice the more difficult they can make it for you to join a different one.
Also be aware NHS practices can close their books at anytime to new patients, and the better ones normally have to. So unless you live with someone at the larger practice you may find you can't change.
Cheers. Thats sort of an area thats confusing me. I dont have autoimmune thyroiditis. Elevated tsh but subclinical and in range ft3 and ft4. If i wasnt ttc then it probably wouldnt be treated. But as I am, they may give me t4.
So what is causing the elevation in tsh? Should that be looked at?
All the research i've done talks of hashis or graves. Antibodies attacking the thyroid. I cant find much on when that is not the case.
It seems like taking replacement t4 would be just to tide me over, protect feutus and then come back off after?
I feel so fatigued that im really keen to get to the root issue amd fix it. I turned down ivf because i dont want to add any more imbalance to my whacked body.
Sorry hope that doesnt come off as ranty. i just am ready to be well.
Thanks - everyones advice is really appreciated and will be actioned. Im going to a new surgery this avo.
Yes, you're right. It is puzzling that you don't have antibodies. The vast majority of hypothyroid people do have Hashimotos. I'm one of a smallish number who have had thyroid cancer and therefore a thyroidectomy, so I understand your frustration about how little is written about other forms.
This is actually quite a big deal. The second most likely explanation is Central Hypothyroid. Your pattern doesn't really match that either; the way that works is that the TSH is produced by your pituitary. It stands for Thyroid Stimulating Hormone, and is a signal the body makes to your thyroid to produce more hormone. Central is when the pituitary can't make enough TSH, and so all 3 numbers would be low. But the pituitary can misbehave in other ways, like making too much TSH, but you'd expect a much better discrepancy than you've got. But these are even more tiny numbers. Must be a small fraction of 1% of hypos.
Actually there is another simple explanation for your results. One negative test for Hashis doesn't actually prove you don't have it, there can be false negatives, but not false positives. The antibodies fluctuate so are sometimes high and sometimes low. In probability terms this is the most likely.
I don't know much about this question, though, and what additional very rare conditions might exist. You've got Clutter in your thread, who is extremely knowledgeable, so maybe ask that specific question to her. Having thought it over a bit more I think undiagnosed Hashis is your most likely, and persuing that is the obvious first step. You need to be retested in a few months, and maybe even again if it's still negative.
In terms of your actual numbers, they are not really discrepant. Your freeT3 and freeT4 are very low - it's quite uncommon to see them so low that they go under range. They are definitely low enough that you'd expect to feel rubbish. It's very clear that you need treatment, but doctors know nothing and can be super stingy with thyroid treatment. You've got an out of range TSH, that should be the gold standard for a GP. You're actually relatively 'lucky', because some people scrape along for years feeling terrible but with a TSH just inside the range. You may have to keep pushing and hassling doctors, but keep pointing out your TSH is over and that you have symptoms. Tcc is just an extra bargaining chip, as they know you need a TSH as low as 2 (this is ridiculously inadequate, it should be 1 or below, but this is what their stupid guidelines say). As soon as you get pregnant your dose should be increased, and you need to get regular tests as your needs will change once the pregnancy is underway.
I've just had a check of the test results I've got on file for myself and friends to make sure I'm correct that your TSH is not surprisingly high given the freeT3 and freeT4.
I've found TSHs as high as 16 while freeT3 and freeT4 were still inside the range, and on another person 9. So actually there's nothing discrepant about the three scores to raise alarm bells.
Thanks for taking the time to help with this. Im reading this several times to wedge it in the brain. And im sorry to hear about what you went through, taking the time out to help others is very good of you.
Hi everyone, here's an update. I'm grateful for your help thus far. I actioned as much as I could.
I joined a new multi doc surgery. i had documentation on my tablet with me, but a printer issue meant i didn't have the NICE guidelines and BTA statement to physically give her. I wrote down my health history and lab results which the new gp accepted.
No diagnosis and no treatment. Tsh not high enough to indicate thyroid issues as everything else is in range.i said the fertility consultant had said 25mg thyroxin so she took blood to do her own tests as tsh can be temporarily elevated.
I told her i know the risks of conception and development with high tsh and she said she'd usually only monitor every three years with my results as is.
I said I check 90% of the symptoms on the Thyroid UK website and she said they're vague and most people do too. Fatigue is just often unexplained and there is no reason for it.
She said pcos could be my situation and she might refer me to an endo.
Blood was taken for tsh and cortisol. The nurse decided to take urine too as he was unsure whether it was blood or urine cortisol test.
I await my results in a week.
I'm on an ivf waiting list of 6 months and to be honest i'm not sure what i will do then. For now i just want to feel well.
She is the best doctor in my area. She was very dismissive of me mentioning hypothyroidism. I am willing to go it alone if need be.
Question - wait for the results next week before deciding a course of action? Or take matters into my own hands?
Also if I go back I will 100% ensure I have all my documents printed. I could kick myself for not being properly prepared for battle.
Thanks again for all your support, I don't have it from anywhere else.
Good plan thanks. I know it's straight forward but I didn't even consider that. I was very thrown by her attitude to my suggestion I had an issue that I needed help with.
I did have it on my tablet in front of her and referenced it, but she pointed out that the tsh may just be temporarily elevated. And she would need to do her own labs as she hadn't heard of medichecks.
When I said that the fertility consultant said I needed a 25g thyroxine she got flustered and said that it was the consultants job to take care of this and not her. So I didn't really know what to make of it. I hadn't anticipated that. Live and learn!
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