Looking for some initial advice/links to other posts that may give me a steer of next steps please. Will try my best to summarise and I apologise in advance for the long post and any typos/incorrect terminology, this is all very new to me but I want to give enough info for relevant feedback.
I am a 31 year old female and my husband and I (also 31) have been trying to conceive for 9 months with no success yet. We have both had a number of fertility-based tests via a gyno and so far everything is indicating that things are normal for us both. We both have healthy BMI's, eat well and exercise etc. I also have regular monthly/normal/pain free periods. I came off the contraceptive hormonal period in November-21 after 15 years on it. Neither of us have ever conceived before.
My TSH result however has flagged on my blood tests and also my dad (around 15 years ago) was diagnosed with an overactive thyroid which eventually resulted in him taking a radioactive tablet to destroy it and he has been stable on thyroxine ever since.
My bloods from April-22 showed my TSH at 0.083 and Free T4 at 17.74. The low TSH (combined with my Dad's history) and the fact we still haven't conceived has prompted me to have a repeat blood test + antibody test this month with a private Endocrinologist in London. Symptom wise I cannot identify any as I have always felt, and still do feel, completely well.
My latest blood results now show my TSH at 3.88 and that I have also tested positive for the antihyroglobulin antibody. He also tested me for things like Celiac issues, Proloactin, Vitamin B and D etc and everything else was good/normal.
The Endocro has said that as I have the antibodies and the two TSH results it is likely when I had the original bloods in April-22 that I was undergoing an autoimmune thyroid 'attack' (I was particularly stressed with work around this time) but given the latest results it indicates this has since resolved itself and my thyroid is getting back to where it needs to be.
He mentioned the aim for my TSH should be around 3.5, apparently they (not sure who he meant exactly when he said this) used to say 2.5 was optimal and would use medication to get people within this range but more recently they now think being around 3.5 is ok and is better than going on and off thyroid medication. He also mentioned this antibody result is indicative of Hashimoto's disease but not that I necessarily have it (which has confused me to be honest).
His recommendation is for me to go for repeat blood tests via my NHS GP every 6 weeks and if my TSH creeps any closer to 4 then the GP can put me on thyroxine.
However I've had a research myself and I've found that the British Thyroid Foundation guidance is 'if you are planning a pregnancy you should speak to your GP to arrange thyroid blood tests and ideally aim for a TSH level of less than 2.5mU/l at the time of conception'.
I have emailed the Endocro with this (as he knows I have been trying to conceive for some time) and explained I am worried since reading this and asked given my Dad's history plus presence of antibodies, if he thinks after my next blood test in 6 weeks time there could be value in my GP working on getting my TSH closer to 2.5 (rather than 3.5). Even if just during this period whilst I am trying to conceive/hopefully fall pregnant?
Even waiting another 6 weeks for another blood test feels like a lifetime when trying to conceive and I am feeling lost, confused, worried etc about the best next steps to take/what to push for.
I have an appointment with my NHS GP next week to discuss but I am sure they will just be guided by what the Encro has recommended. I am also worried I might be bouncing from over to under and even with Thyroxine it won't get this under control so that we can conceive. If we were not trying to conceive, I would be less concerned given I feel completely well and my other vitamin levels tested are normal.
Any thoughts/help/guide/useful links would be much appreciated. Wondering if I should try and find a fertility specialist Endocro (if there even is such a thing) for a second opinion?
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er2012
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Do you have range of FT4? ranges vary between labs and are need for interpretation.
In April the FT4 was about mid range not over range -by most ranges- so the question would be why was TSH so low?
You need FT3 tested. This is the more powerful thyroid hormone.
TGab can be positive with Hashis & with Graves,
Was TPO anti tested as often these are tested first.
What was cause of fathers over active thyroid?
Hashi causes fluctuations of transient high thyroid levels ( FT4 & FT3 - low TSH) over time hypothyroid with low FT4 high TSH & what appears has occured with your results.
What was Vitamin B12 and D? Doctors say in range acceptance you need optimal - have Folate, ferritin also been tested?
A TSH of over 3 is too high for anyone. The thyroid is struggling by this stage. but as “in range” FT4 & FT3 not tested.
the focus should be what your FT4 & FT3 levels are.
Order blood test option (online or phone) and will include kit for finger prick sample. (Can pay extra fee for venous draw)
Recommended tests are completed after fasting overnight (drink lots of water) ideally just before 09.00 as this will show TSH at daily highest.
Avoid supplements containing biotin a few dated before test, it can interfere with test & skew results.
Post back early in week to avoid weekend delays & avoiding hot weather & postal strikes. There’s lots of options, some packages include thyroid function, nutrients and Antibodies, eg “medichecks thyroid advanced”. Others basic function only eg monitor my health.
Free T4 reference range from April 2022 was 12 - 22. Free T3 doesn't seem to have been tested in April 2022.
I am waiting for my full blood test results (antibodies included) that were taken this month to be sent to me by the doctor, I believe T3 and T4 were both tested but not sure on Folate or ferritin. Hopefully the full report will come through any day now and I can confirm (what I have included above is all that the doctor told me over the phone). They were not taken around 9am, closer to 18:00. Noted r.e. retesting and above links.
My father doesn't recall the underlying cause for his but he is looking at the paperwork from the hospital to see if it was confirmed.
Apologies but what is TGab? Is this the antihyroglobulin antibody?
Supplements wise I don't think I take any Biotin, this is B7 right?
I take 400ug of folic acid per day and also a female health supplement every day (Nutri Advanced | MegaMag® Fem Balance Magnesium Formula | Myo-Inositol Formula). Ingredients/amounts below:
Regarding your Coeliac Screen coming back negative, that is obviously good. But a very high percentage of people with thyroid disease are found negative for coeliac disease however they feel much better with a gluten-free diet. It has to be ruthless - being just a bit gluten-free doesn't work. You could try a gluten-free diet for 3 - 6 months to see if it helps your health or chances of conception. If it helps then stick with it, if it doesn't then go back to eating gluten. If going back to eating gluten makes you feel worse again then give it up permanently.
Some people try giving up lactose (after giving up gluten). The same rules apply to that as it does to giving up gluten. Make sure you don't give them both up at the same time. If you got a benefit from giving them both up you might not know what was actually helping. It might be the lactose, or the gluten, or both.
It is not a good idea to give up more than one thing at a time. It is also not a good idea to give something up without testing because you could end up with a very restricted diet, which is not good for people with thyroid disease, or for people who want to get pregnant.
Haemoglobin - Bottom of range, suggesting that you might be tending towards being anaemic but you aren't officially anaemic yet. If this is the case then your less than optimal ferritin and/or B12 might be affecting this. It also suggests you might have low(ish) iron, but without testing it is not safe to guess.
MCV - Mean Cell Volume - This tells you the average volume of your red blood cells. When MCV is low in range or under range i.e. red blood cells are small (microcytosis) it suggests that you might be short of iron. If MCV is high in range or over range i.e. red blood cells are large (macrocytosis) it suggests that you might be short of B12.
If you are short of both iron and B12 the MCV is probably not informative. Note that taking folic acid or folate supplements can improve/reduce macrocytosis and hence disguise B12 deficiency.
Your Lymphocytes are over the range. These are a type of white blood cell that rises to help kill an infection. Had you had a cold or Covid at the time of your blood test or not long before the test. Your result is very slightly over the range, and will hopefully drop into range by itself.
The things I haven't mentioned are all well within range. For more info on your results see this link:
Personally I keep my active and serum B12 levels at top of range or higher, and consider a serum level of 1000ng/L to be necessary for me.
To supplement B12 the best supplement for most people is methylcobalamin, which can be bought on most supplement sites on the web. I would suggest a dose of 1000mcg per day.
Folate - Your folate level is good. Optimal levels are upper half of the reference range, or at least in double figures if the reference range doesn't have an upper limit.
If you are currently taking folic acid because you are trying to conceive, please note that no human had ever taken folic acid before 1943 - it is synthetic. Humans got the natural alternative from food before folic acid was developed. The best form of supplemental folate, which can be bought without prescription, is methylfolate. Since your level is reasonably good I would suggest that you would only need a separate supplement if your level drops.
The best option for supplementing B vitamins generally is taking a B Complex supplement with activated vitamins i.e. methylcobalamin and methylfolate.That may be all you need to improve your B12. If your B12 or folate levels drop or don't stay high enough for you, then you can add in a methylcobalamin and/or methylfolate supplement as appropriate. But once your levels are optimal you could drop the extra supplement(s) and take just the B Complex.
I don't know what the current recommended B Complex is on the forum. I'm still taking Thorne Basic B, which was recommended up until recently. SeasideSusie would know.
Potassium is 22% through range. Since you feel well I would think this is probably okay. But you could try eating more potassium-rich food to increase your levels to mid-range. You might find this link (including the comments) of interest :
Urea, Creatinine and eGFR are all good, and show that your kidneys are healthy.
Ferritin - your result isn't bad but it could be better. Optimal for people with thyroid disease is considered to be mid-range (approx 82) or 90 - 110 nmol/L depending on source. It isn't considered a good idea to supplement iron unless you have had an iron panel done as well as a ferritin test, for reasons given in this link :
You could add more iron-rich foods to your diet, but I wouldn't suggest supplementing just on the basis of a ferritin result.
IgA - I don't know anything about this.
Thyroid results:
Your TSH is too high for most people with thyroid disease to feel well. You would be treated for hypothyroidism in some countries, particularly since you are trying to conceive.
Free T4 is 16% through range
Free T3 is 38% through range
People who are hypothyroid all have a certain level that makes them feel best. For many of us this is approx 60% - 80% through the range for Free T4 and 50% - 70% through the range for Free T3. But if you feel best at higher or lower levels that's okay too. However few people would feel good with your levels - they are much too low for most of us.
I am waiting for my full blood test results that were taken this month to be sent to me by the doctor. Hopefully the full report will come through any day now and I can confirm full results and ranges (what I have included above is all that the doctor told me over the phone). They were not taken around 9am, closer to 18:00.
Supplements wise I take 400ug of folic acid per day and also a female health supplement every day (Nutri Advanced | MegaMag® Fem Balance Magnesium Formula | Myo-Inositol Formula). Ingredients/amounts for this supplement are below:
You are right, my GP was most unhelpful when shown these results today. She advised that going forward they will only put me on Thyroxine, or refer me to an NHS Endocrinologist (as she won't take notice of a private Endocrinologist view), if my TSH levels are way over their 'normal' range on at least two blood tests, months apart. Their normal range for TSH is 0.3 - 5.6!
I told her I have been trying to conceive for some time, my Father's history and the Thyroid Foundation guidelines r.e. less than 2.5 for conception but she said none of this makes a difference.
Do you know if there are any NICE guidelines referring to optimal TSH levels when trying to conceive and if you could share the link?
My bloods from April-22 showed my TSH at 0.083 and Free T4 at 17.74.
A TSH that is so low suggests that either you are hyperthyroid, or you are over-medicated with thyroid hormones, or you are having one of the fluctuations that occur in people with Hashimoto's Thyroiditis, particularly in the early stages. If you were hyperthyroid your Free T4 would probably be around 40+, so I think we can forget that as a possibility. To be absolutely sure though, you would have TSH, Free T4 and Free T3 tested from the same blood draw, early in the morning (about 8am - 9am) having eaten and drunk nothing but water since the evening before. If you take thyroid hormones your last dose before testing should be 24 hours before. Leaving it longer than 24 hours is definitely NOT a good idea for getting an accurate result. If you were hyperthyroid your Free T4 would most likely be 40+, and your Free T3 (which is even better than Free T4 as an indicator of hyperthyroidism) would most likely be 50+ or 60+. TSH alone is not a good indicator for diagnosing hyperthyroidism.
My latest blood results now show my TSH at 3.88 and that I have also tested positive for the antihyroglobulin antibody.
The big fluctuation from your April result and your positive TG antibody makes it most likely that you have autoimmune hypothyroidism (aka autoimmune thyroiditis, Hashimoto's Thyroiditis, or Ord's Thyroiditis). Hashi's and Ord's are not identical - Hashi's presents with a swollen thyroid (a goitre), Ord's does not involve a goitre, instead it causes the thyroid to shrivel up. In the UK the name that doctors use mostly is autoimmune hypothyroidism or autoimmune thyroiditis. Few of them will have heard of Hashi's, and even fewer will have heard of Ord's.
I wouldn't swear to it, but I think from my reading on the forum that people with a family history of hyperthyroidism or hypothyroidism might be at greater than normal risk of getting thyroid disease but it isn't guaranteed that if one generation gets hyperthyroidism that the next generation will get the same form of thyroid disease. Your father could have had hyperthyroidism and you could get hypothyroidism.
a private endocrinologist who has diagnosed me with auto-immune thyroid disease and recognises optimum TSH levels for trying to conceive are lower (<3.5, possibly closer to 2.5)
Your endocrinologist is completely wrong about 3.5 being "optimal" for conception. It is LESS THAN 2.5. I am convinced that the rules got changed just to save money, but obviously I have no proof.
It shows that the most common TSH in healthy women with no known thyroid disease is 1.25. It makes no sense at all to declare that people with thyroid disease should have a higher TSH than healthy women. And on the basis of patient experience, most of us with hypothyroidism feel best with a TSH of 1 or less once we are on treatment.
Another point is that the UK is one of the most sadistic countries in the world in treating hypothyroidism - they usually won't treat until TSH is 10+. In some countries with a more compassionate medical profession people can be treated with a TSH of 3+.
His recommendation is for me to go for repeat blood tests via my NHS GP every 6 weeks
The chances of your GP agreeing to that are low I would have thought, but then I'm very pessimistic when it comes to the medical profession. If your GP does test at all and only gets TSH tested you won't be much better off. You need the full set - TSH, Free T4 and Free T3.
It is possible to get private finger-prick tests done for TSH, Free T4, and Free T3. See these links :
With the MMH discount of 10% you can get all three tests done for £26.10, and you don't even need to see a doctor. If you go ahead with this you should post your results and reference ranges on the forum to get feedback from members.
It is possible to buy Levothyroxine, T3 and some forms of NDT online without prescription.
NDT is difficult to find these days, and is probably not worth the effort. Few honest suppliers for NDT seem to be available now.
It may be worth your while to buy some Levo, but be aware that it makes getting a diagnosis of hypothyroidism and a regular prescription from your GP virtually impossible, because taking Levo will reduce your TSH and increase your Free T4 well into the normal range so they will assume you are healthy. It might also improve your Free T3 as well.
Keeping TSH low with Levo will reduce the work done by the thyroid. This may reduce the autoimmune activity which is destroying your thyroid.
If you went on Levo and it helped you to conceive and to maintain a pregnancy you might be able to come off the Levo at some point after giving birth. If you did this, and could keep it up for long enough (it could take months) you might be able to get a diagnosis of hypothyroidism that way. But there are no guarantees with the rules regarding this in the UK. Note that for the first few weeks or months of pregnancy the embryo/foetus does not have a thyroid of its own, and once the thyroid has developed it may not be fully functioning for a while. So the offspring needs your thyroid hormones.
I was first told my thyroid was "borderline underactive" by an IVF Clinic early in the 90s, but they said I didn't need treatment (and I believed them - this was before the internet had really taken off, so I had no information to tell me otherwise). I went on to do five IVF treatments, got pregnant three times, and miscarried them all. I eventually had a hysterectomy aged 36, and never had children. I had/have multiple other health problems besides thyroid issues, but I have often wondered if I had managed to optimise my thyroid hormone levels and nutrient levels whether I would have maintained one or more of my pregnancies.
It took me about 23 years to get a prescription for Levo from an NHS GP, and she was extremely reluctant even then. (It turns out I have TG antibodies but not TPO antibodies, and I also have poor TSH production because of a damaged pituitary. But TG antibodies alone are ignored, and knowing that my pituitary is abnormal is ignored.) Since I don't get on with doctors I ended up treating myself almost as soon as I found out it was possible and I feel quite a lot better than they would allow me to be. I have wondered if I would have had children if I had known in my early 30s what I know now.
People who are hypothyroid and untreated or poorly treated have a much greater chance of having a miscarriage than healthy women who are pregnant.
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