Hello. I am 29-weeks pregnant and my TSH just came back 0.3. I feel I have an overactive thyroid (wired, tired, hyper, drinking lots, not sleeping), and have previously had a big goiter and hashimotos. The NHS doctors/midwives etc insist their reference ranges are right (they aren’t pregnancy ones, let alone trimester specific) and according to the thyroid UK ones it seems I’m overactive. I can try go private but anyone know someone in london who could help and won’t just use the useless NHS reference ranges please? Thank you!
Pregnant, overactive, NHS aren’t helping - Thyroid UK
Pregnant, overactive, NHS aren’t helping
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TillyFlop7
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SlowDragonAdministrator
So you have Hashimoto’s...are you on levothyroxine?
If so how much and which brand
Essential to test vitamin D, folate, ferritin and B12 especially when pregnant
What vitamin supplements are you currently taking
Just testing TSH is completely inadequate.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's)
Ask GP to test vitamin levels, Ft4, Ft3 and TSH
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Thank you. I should’ve been clear, I used to have hashimotos due to Lyme disease. I took nothing for it and still don’t. I was clinically diagnosed by my US Lyme doctors.
I’m on antibiotics to prevent Lyme congenital transfer and I take supplements:
Vitamin D
Methylfolate
A raw multivit
Omega 3&6
Gentle iron
Vitamin C
What I’m hoping to find is a private london-based endocrinologist who can do these tests as then I can do it through my work health insurance.
My GP will only do a ferritin test.
Are there any London or Kent based doctors you recommend please?
Have sent you a PM. But would suggest you do full testing as SlowDragon recommends before you see anyone, as you will get best value from the consultation with nice fresh blood results to discuss. Good luck x
Thank you. Though like I said I aim to go through work insurance so need to do the tests via the private endo not beforehand.
The problem is that if you go to a private Endo they will have had exactly the same training and work to the same guidelines as the NHS doctors you've already seen.
It's a roll of the dice that you may be very lucky and get one who is a nice human being and does the best they can within the guidelines. But most of them aren't and that is just as likely for any doctor you meet, going private doesn't up your chances of finding one who will help you.
Doing your own mail order tests is the only way you can make sure the complete set gets done, particularly when you don't have months or years to wait around.
Thanks. That’s why I came here to ask for an Endo recommendation.
That is what I am telling you, you're very unlikely to find an Endo who will do all the testing that SlowDragon recommends. That's the answer to your question.
It would be lovely if there were magic Endos around who could be relied on to help you with your problem, and to help many of us here who have been disabled and very sick for years. There probably wouldn't be a need for this forum if there were. But unfortunately for all of us they just don't exist 
I understand that feeling as I have Lyme disease and UK doctors for it just don’t exist. But it does feel like it’s taken an awful lot of messages before anyone’s gotten to telling me that. I have also been very kindly sent a few Endos to try. So maybe that’s not everyone’s experience.
Good luck. I very much hope that one of those Endos does turn out to be a good one!
SeasideSusieRemembering
TillyFlop7
The NHS doctors/midwives etc insist their reference ranges are right (they aren’t pregnancy ones, let alone trimester specific) and according to the thyroid UK ones it seems I’m overactive.
The ThyroidUK ranges are examples, they are not set in stone. It's quite clear, eg
TSH = THYROID STIMULATING HORMONE
This hormone comes from the pituitary to stimulate the thyroid gland into making more hormone. TSH rises when the thyroid is struggling.
The approx. reference range for this test is 0.4 to 4.5.
and
Do not just accept “normal”. You should always ask for the actual figures of your test results – your level as well as the ranges. Be aware that different areas in the country use different test ranges so one TSH test range might be 0.5 – 5.0 but in another area the TSH range might be 0.4 - 4.0.
Each lab has their own range, you cannot use any range other than the one that comes with your results. So what you are being told by the NHS doctors and midwives is correct, the ranges that come with your results are not useless, they are right because whatever ranges come with your results are from the lab that carries out your test.
Sorry that doesn’t make any sense. They agree that the ones from their lab aren’t pregnancy specific reference ranges. And the healthy TSH levels during different trimesters of pregnancy vary from each other as well as from a non-pregnant person. So obviously I need either a test from a lab that ACTUALLY looks at pregnancy reference ranges, or a doctor who can interpret the tests according to more accurate and useful reference ranges.
TillyFlop7
I'm not saying you don't need pregnancy specific ranges, but you said
according to the thyroid UK ones it seems I’m overactive.
and I'm explaining that the ThyroidUK ranges are only approximate, as is explained on their website, so you can't use the ThyroidUK ranges to interpret your results which will have a different range. Also, I can't see any pregnancy specific ranges on ThyroidUK's website, if you have managed to find any perhaps you'd be good enough to link to the page for me.
We do see results sheets that members post that include the different ranges for different trimesters so some NHS labs do include this information, obviously yours doesn't but that doesn't mean that the ThyroidUK ranges can be substituted.
thyroiduk.org.uk/tuk/guidel...
Thank you.
Those ranges are for the Lothian area, is that the area you are in?
No. But as I keep saying the reference range associated with my test are for that if a non-pregnant person. And so I need to instead compare against reference ranges for a pregnant third trimester person. As clearly the lab I had my tests through don’t do that, I need to get rested yes through a lab that does. And am hoping to find an endo who uses a lab that does.
But as I keep saying the reference range associated with my test are for that if a non-pregnant person.
I understand that.
And so I need to instead compare against reference ranges for a pregnant third trimester person. As clearly the lab I had my tests through don’t do that, I need to get rested yes through a lab that does.
So you need a lab in your area because ranges are basically based on local population.
Have you thought about contacting the lab which did your tests and asking if they have specific ranges for the different trimesters during pregnancy?
Is TSH all they tested?
Yes I do need a lab in my area, that's why my original post was asking about endocrinologists in my area!
Have you thought about contacting the lab which did your tests and asking if they have specific ranges for the different trimesters during pregnancy?
Is TSH all they tested?
RedAppleAdministrator
TillyFlop7, my TSH just came back 0.3
Please tell us the reference range that goes alongside that result. If you don't have this info, you need to contact the surgery and obtain it. This is the only range that can be interpreted with your TSH number.
If your TSH was below the reference range in your lab, an FT4 test would usually be automatically done in order to confirm a diagnosis of hypERthyroidism. If there is no FT4 result alongside your TSH result, then it suggests your TSH actually is within the lab reference range, and would explain why your doctor doesn't consider it a problem. (note, I am not saying your doctor is correct).
Regadless of whether or not you see another doctor (private or otherwise), Getting your own home full thyroid panel done would shed further light on your situation.
The reference range is 0.27-4.2. Hence why they say it’s fine. But AGAIN, this isn’t a reference range for a pregnant person. Let alone third trimester.
TillyFlop7, But AGAIN, this isn’t a reference range for a pregnant person. Let alone third trimester.
Yes, we get that. But having the additional FT4 and FT3 numbers done at the same time as the TSH will help to indicate what your thyroid is actually producing. Pregnant or not, TSH is not the most important measurement of what's happening with thyroid hormones, FT4 and FT3 are, along with antibodies.
How have your thyroid tests been during the first and second trimester? Has Graves disease ever been tested for? Have you been on any thyroid medication at all during this pregnancy (i.e. antithyroid medication or hormone replacement/levo)?
Ok, I get what your asking but can you call the lab that did this (current)thyroid test and ask them if they provide a specific thyroid test for a pregnant person ... it could be that the midwife wasn’t aware that possibly 2 types of thyroid test exists.
This is just a thought.
That was my suggestion too but seems to have been ignored.
Not ignored, thanks for the suggestion, I have contacted them.
what did they say?
Impossible to diagnose overactive on TSH alone as it is a pituitary hormone. You need ft3 and ft4 and only if they are above range would you be classed as overactive. I appreciate you are concerned as in the third trimester of pregnancy, but if you have been diagnosed with hashimoto’s disease it is more likely to be a hashimoto’s flare for which there is no treatment as it is a temporary one off release of thyroid hormones as part of your thyroid dies and you then swing into underactive due to the destruction of thyroid tissue. You need repeat bloods with ft3 and ft4 and if possible the additional tests previously suggested. It is extremely likely you will need to be monitored after the birth of the baby. Good luck.
Thanks. The thing is, I was asking specifically for endocrinologists in London or Kent who could help (with the further tests, monitoring, possible hashimotos). So, thanks for the advice, but you're telling me exactly what I said in my original post. Thanks for the luck.
Have sent you a PM about an endocrinologist in London
Thanks!
Tillyflop7,
I found this info on a medical site.
Being pregnant can be a stress test for the thyroid. The size of the gland increases by 10%. Production of thyroid hormones T3 and T4 increases by about 50%. As a result, the normal thyroid-stimulating hormone (TSH) level during pregnancy is lower than the normal nonpregnancy level.
Recommendations for Testing for Thyroid Disease During Pregnancy
The new recommendations for TSH levels during pregnancy are the following:
First trimester: less than 2.5 with a range of 0.1-2.5
Second trimester: 0.2-3.0
Third trimester: 0.3-3.0.
If the TSH is greater than 2.5 at any time during pregnancy, T4 levels should be checked to determine whether the hypothyroidism is overt or subclinical.
Thanks. I’ve found lots of different reference ranges tbh. And people on here all seem to be obsessed with the fact that you can’t take one that’s not from the lab you tested at (thoygh I don’t understand why).
The test result for FT3 and FT4 is a number within a specific ‘reference range’. Without knowing which range your test lab used, the numbers are pretty meaningless. There are also different ranges which apply during pregnancy.
The test result for FT3 and FT4 is a number within a specific ‘reference range’. Without knowing which range your test lab used, the numbers are pretty meaningless. The NHS uses a number of different labs, so doesn’t have a single reference range. Currently, I don’t think you could assume that someone from the same area would have had their tests done by the same lab. There are also different ranges which apply during pregnancy, but I think you would probably need your endo to interpret these - they might not be flagged correctly by an automated lab report.
TSH is generally consistent, although the treatment offered can be a bit of a lottery. TSH is a signal from the pituitary which tells the thyroid gland to produce more hormone. When thyroid levels are elevated, TSH will therefore (usually) be low.
To find out what is going on, you really need antibody tests for both Graves’ and Hashi’s - TRAb or TSI for Graves’, TPO is a general indicator of autoimmune disease, TGab for Hashi’s. If these come up negative, you may need a thyroid scan, although whether they would consider that worthwhile under current circs and given your condition is another matter. Just don’t let anyone start you on carbimazole (an anti-thyroid drug) if you are in the first trimester of pregnancy: if you need an anti-thyroid, it should be PTU.
If you stat a new post giving your rough location and requesting recommendations for endos/ pregnancy, the mods will close your post so that people will know to pm you any suggestions. At the same time, you can request the thyroid U.K. list of endos.
You may also find these links useful:
TillyFlop7
And people on here all seem to be obsessed with the fact that you can’t take one that’s not from the lab you tested at (thoygh I don’t understand why).
No, we're not obsessed with that fact, we just know how it works. It is a fact, you just cannot take your result from your lab with their own range and use another lab's range. This is because labs use different machines which will be calibrated differently (as well as local population coming into it).
The hospital which does my GP's tests uses the range 7-17 for FT4. I also use Medichecks and their range for FT4 is 12-22. When I have my tests done, I can't use the Medicheck result with the GP range and vice versa. To compare those results I have to use the percentage through range that my result lies and I use this calculator:
Let me illustrate that by the tests I had done with my GP, then 5 days later with Medichecks.
GP: FT4: 14.2 (7-17) = 72% through range.
Medichecks: FT: 19.5 (12-22) = 75% through range.
So allowing for natural fluctuation they can be seen to be virtually the same.
If I use the GP result of 14.2 with the Medichecks range of 12-22 then I am 22% through range.
If I use the Medichecks result of 19.5 with the GP range of 7-17 then I am over range at 125%.
So you can see why you can't take a result from one lab and use it with the range from another lab.
As for TSH, GP range is 0.35-5.5 and Medichecks 0.27-4.2. So if I had a TSH of 0.5 then with my GP it would be 2.91% through range and with medichecks it would be 5.85% through range.
I hope that explains things and illustrates that we are not obsessing, just stating facts.
Thanks for explaining.
Tilly, The info above is from a real medical site.
It would be helpful if you could post a link Batty1, then Tillyflop7 could check it for herself.
I try to do that but it never works ... can someone explain how I can post links.
medscape.com/viewarticle/75...
Oh my gosh.... I did it, I did it...lol
Oh my gosh.... I did it, I did it...lol
😂
👏👏👏
It’s the small things in life that make me happy!
The reason why is that your sample gets sent off to a particular lab and the test is performed by a particular machine.
These machines are not all the same, so if my sample was split in two and sent off to two different labs, two different machines would be used to test the samples, and I could get two quite different numbers as the result.
To make up for the fact the numbers could be different, each of the two different results would be reported with different reference ranges. Even though the raw number of my test result would be different, the number should be at about the same point in the two different sets of ranges.
For this reason you cannot take a range for machine 1 and apply it to results generated on machine 2. They are specific to that particular machine.
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