I am 6 weeks pregnant and on the 1st of September I was diagnosed with subacute thyroiditis (bloods and ultrasound). I was admitted to A&E as I had a fever and a high hart rate (145). The first endocrinologist that saw me said that normally they would start with NSAIDs but as I am pregnant they’ll try first with paracetamol and if needed move to steroids. My CRP value was 88 and I had pain on my neck, jaws and ears as well as the high temperature and fast heart rate. He confirmed that I had started to be in hyperthyroidism but the values weren’t yet super worrying. He asked me to return the hospital a few days later (6th September) to monitor the situation. When I returned to hospital, they found that I still had an elevated heart rate (around 120) as well as sinus tachycardia with ectopics beats. My TSH was less than 0.01, Free tri-iodothyronine 12.3, Free Thyroxine 42.5 and CRP 55. I was seen by a different endocrinologist (expert in diabitis) who said that givens my CRP had gone down and the thyroid values had stayed the same, I should be seen again in two weeks. She prescribed me beta blockers but said to only take them if I felt like my heart was really fast. I asked about steroids but she said they weren’t necessary and to use paracetamol. I feel that in the last two days my pain is a lot harder to manage just with paracetamol (I was trying to take it only once a day because of the pregnancy, but it looks like I need it every 12h) and I always have a higher temperature than normal (between 37.5 and 38.4). I am really scared about how this will impact the pregnancy ( I had a miscarriage in the past and this was our fourth IVF attempt) as well as my general health. A few questions if you are able to help:
-is waiting until the 21st of September for the next review a reasonable time to monitor the situation? Should I try to call the hospital to say the pain is not improving?
- are there any recommendations that you could send to me privately for endocrinologists who specialise in thyroid issues during pregnancy?
thank you all for any advice you can give
PS
I had covid at the end of June and the doctors confirmed they were going to check for thyroid antibodies to rule out autoimmune conditions. I am on additional progesterone and blood thinners for the pregnancy.
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Habibi87
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you need to get vitamin D, folate, ferritin and B12 levels tested
Ideally full iron panel too
For full Thyroid evaluation you need TSH, FT4 and FT3
plus both TPO and TG thyroid antibodies tested for autoimmune HYPOTHYROID disease….also called Hashimoto’s ( can also be mildly raised with Graves’ disease)
TSI or Trab antibodies tested for autoimmune HYPERTHYROID, also called Graves’ disease
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid …..can be misdiagnosed as Graves’ disease is all antibodies not tested
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with all thyroid issues
What vitamin supplements are you currently taking
When were vitamin levels last tested….please add results and ranges
Recommended on here that all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thank you for all the advice, here are the results I have from the tests during IVF treatment .I was always told all was fine from a thyroid point of view until this sudden diagnosis of subacute thyroiditis.
23/07/2021
free T3 : 4.5
free T4: 14.8
thyroxine (T4): 73
thyroglobulin anitbody: 10.6
thyroid peroxidase antibody: less than 9
TSH: 1.79
15/09/2021
Vitamin D :81
15/11/2021
free T3 : 4.7
free T4: 15.6
thyroxine (T4): 78
thyroglobulin anitbody: 11.4
thyroid peroxidase antibody: 10.6
TSH: 1.33
19/05/2022
free T4: 13.9
TSH 1.11
22/08/2022
free T3 : 6.5
free T4: 17.8
thyroxine (T4): 127
thyroglobulin anitbody: 15.9
thyroid peroxidase antibody: less than 9
TSH : 0.4
All the tests above were done via my IVF clinic. The tests on the 22/08/2022 were done by the clinic on my request as I had started to have pain in the thyroid area.
Hospital tests 6/09/2022
TSH less than 0.01, Free tri-iodothyronine 12.3, Free Thyroxine 42.5 . They said they were also going to check the antibodies and would only call me if there was a problem.
Iron and ferritin have never been tested. I’ll arrange these tests immediately.
“TSH was less than 0.01, Free tri-iodothyronine 12.3, Free Thyroxine 42.5 and CRP 55”
The TSH is very low which you would expect with high thyroid levels. The thyroid stimulating hormone is a pituitary hormone which responds to thyroid levels and signal thyroid to increase / decrease the making of new hormone. As levels are high it’s reduced signally the thyroid there is (more) than enough hormone.
A FT3 of 12.3 & FT4 of 42.5 - do sound quite high, but ranges can vary quite a deal between labs so try to get a hold of printed results & ranges.
There are quite a few reports that Covid triggers & worsens thyroid issue. Have you had -all- thyroid antibodies tested? With subacute thyroiditis, which is often painful, the hyperthyroidism is transient, there can sometimes be a transient time with low thyroid levels but it’s expected the levels normalise.
With autoimmune thyroiditis, in early stages there can be transient hyper but ultimately the low level continue.
Then there are conditions which cause continuous hyper. I believe as you have presented with painful thyroid doctors are assuming subacute thyroiditis and adopting a monitoring watch & wait approach, but it might be worth seeing what -if any- antibodies have been tested.
There’s an overlap with antibodies but TPO & TG - most common with hypothyroid. TSI & TRab with hyperthyroid.
Did you have any previous thyroid tests to see if there are optimal pre pregnancy?
Also important to test:
B12
Ferritin
Folate
Vitamin D
Having elevated thyroid levels (FT4 & FT3) will affect you, but if managed will not risk pregnancy.
If doctors go on to suggest and anti thyroid - propylthiouracil (PTU) is used during pregnancy. This is usually only if Graves is diagnosed. (Positive TSI or TRab)
A specialist with need to carefully manage you.
Low thyroid levels does affect progression (needed for growth & development) so monitoring FT4 & FT3 for decreasing will be as important than checking how high they are.
Do ensure FT4 & FT3 are tested and not only the TSH. The TSH doesn’t always reflect thyroid levels or has a delayed response, meaning your thyroid levels drop but TSH doesn’t rise.
I have added all the historical data I have in my reply to SlowDragon. I don’t know if it shows anything ?
Do you think I should call the hospital to check what antibodies they have checked? They said they’d call me if there is a problem, but I don’t even know what they are testing.
I will order blood tests of:
B12
Ferritin
Folate
Vitamin D
Iron
I have been taking vitamin D2000iu and methyl folate 800 daily for many months now based on my IVF clinic recommendation.
Always best to find out exactly what doctors are intending to test. ( it’s often missed if results don’t come back complete).
Never assume a full test is being carried out, often it’s not. eg TSH only & not thyroid hormones. Ferritin not iron. One form of Antibody (only TPO only ). I’ve seen people come back with non thyroid antibodies being tested & told result ok.
Always check results & keep records. The ranges are wide something in range is acceptable to Doctor but might actually show a problem.
All the historic values were within the ranges which were:
free T3 : 3.1-6.8
free T4: 12-22
Thyroxine (T4):59-154
thyroglobulin antibody: 0-115
thyroid peroxides antibodies: 0-34
TSH: 0.27-4.2
I have ordered the B12, folate, ferritin, vitamin D tests.
I forgot the iron, but I’ll try to add it
I haven’t had any luck on where to test for TSI or TRab antibodies, would you be able to help?
How do I get all the results of the blood tests from the hospital ? Is it enough to email them? Also all the values I have from the hospital have no ranges….
(You have link for private companies & discount codes in slowdragons reply)
This is for TRab (which measures blocking, neutral & stimulating antibodies affecting TSH receptors)
The title refers to “stimulating” which is misleading the TSI test is for stimulating only.
Both are bio markers for Graves.
This is more expensive test & also must be venous draw - (can’t be by finger prick unfortunately) so will work out expensive. Might want to pursue with hospital first.
Online access to medical records very useful but often GP specific (if in England contractually mandated to supply, other areas vary).
Also no automatic access to hospital held records. Contacting the hospital directly and requesting they post you copies of blood test is possible especially if recently & date known.
Waiting to see what included in letter GP is not only going to take a long time but very likely is going to be a very short summary not a full report.
If you find there’s any obstruction there are other formal ways to request copies of hospital records. You are legally entitled to your records.
Look on the hospital website as most have a contact email for data or health records coordinator. It might be listed as health records department / library. If not on website would try the switchboard and ask it there’s a medical records department. Hospitals usually have their own application form (this is similar to subject access request- SAR) where you can request single, or entire record.
I have done both. The single record was emailed back quite quickly. The full record being a larger record was posted. ID and a witness signature may be required which I was able to submit via email. Photo copies via post can be used too.
I have done the blood test today (but not yet for TSI or TRab). I had to go to the clinic as it said that folate often doesn’t work via finger prick. Is that true or can I save some money next time? Results should be back in two days.
I also managed to book an appointment with a private endocrinologist for Friday via my work health insurance. Could you advice on key questions to ask?
I still have strong pain in my neck, ears and jaws as soon as the paracetamol dies down. I also still have a fever and high and irregular heart beat.
I didn’t manage to get hold of gp or hospital for full details of what they have tested as I am exhausted, but will try tomorrow.
I’m sure I’ve read folate does has a high failure rate when performing finger prick but it certainly not impossible as I’ve managed to do it and my venous draws have often Haemolysed.
I believe Medichecks for example gives partial return if that element fails. But might it a better to have done by vendors draw.
Ask your endo exactly what results mean and what is cause of abnormal levels.
The plan on when to monitor - and how often, plus what stage of what form of treatment might be necessary.
As you’ll have your results prior to appointment start new post with the full results and members can likely add more key questions.
What beta blocker & dose have you been given? eg Propranolol? Has it helped with heart rate?
Hope you get some rest & feel up to chasing up hospital tomorrow or day after.
The Medicheck doctor just called me as he was worried by the results. I am amazed by how good their service is and how detailed he was in his feedback.
Here they are with some additional comments:
CRP: 111.9 (0-5). This is much higher than last week (55) and suggest my inflammation is going up thus the extra pain and fever ?
Ferritin: 339 (13-150). My ferritin has normally been extremely low. Adviced that the result is likely a consequence of CRP and should be retested once CRP under control.
Folate serum: >20 (>2.9). The folate supplements I have been taking for months seem to be working ?
Vitamin D: 99 (50-200). I have been on vitamin d 2000iu daily for months
Vitamin B12 151 (25.1 -165)
TSH: less than 0.01 (0.27-4.2). In line with result last week
T4: 49 (12-22), higher than last week 42.5
T3: 16.4 (3.1-6.8), higher than last week at 12.3
Thyroglobulin antibodies: 16.3 (0-115)
Thyroid peroxidase antibodies: 14.7 (0-34)
I managed to speak to the hospital today re antibodies. They said that the antibodies for Hashimoto are fine. They are still waiting for the results of the antibodies linked to Graves .
Are the T4 and the T3 increases in a week significant or ok?
I think the CRP might explain the pain and the fever and why I feel so unwell on top of the heart rate and the loss of weight ?
Currently only on paracetamol. Doctor said to take propranolol only if heart rate felt really high (2 tablets 10mg x 3 times a day). Haven’t taken any yet.
I will call the hospital again tomorrow and send the values as I am particularly worried that the thyroid is getting bigger and more painful.
We don’t know the range for the hospital results (only the medichecks ones) so although the values are higher numbers - that does not necessarily mean they are the same percentage above range. - It could be different.
Some fluctuations & variability is expected .
FT4: 49 pmol/l (Range 12 - 22) 370.00%
FT3: 16.4 pmol/l (Range 3.1 - 6.8) 359.46%
Both values are over 3 times normal range. Do you have another test soon & I would ask doctors what the plan is?
Do you have Fit bit or tracker to monitor heart rate? I can understand you wanting to avoid if unnecessary medication, but If your overall resting heart rate is higher - I would perhaps consider taking propranolol at timed intervals.
If it was prescribed I’m assuming it is safe in pregnancy? Having a better of control heart rate will relieve symptoms & potentially any associated risks may be considered safer than allowing heart rate to continue to be too high.
Propranolol has mild antithyroid element & often prescribed when hyper. I was given high dose propranolol and was made Ill when told to stop abruptly should be reduced slowly.
Many find taking when needed and stopping when not wanted no issue but I was sensitive to reducing propranolol and still take a very low daily dose for migraine prevention.
So the hospital has just called me to say that somehow ,even though they requested TSI antibodies, the test was not run… they don’t want to decide on medications until they are sure if it is Graves or De Quervains (subacute) thyroiditis as they would treat them differently.
So I now need to go back to the hospital for bloods and wait a few more days for the results.
Feeling a bit upset, but I suppose that it is quite standard for things like this to happen?
Not much progress of getting ranges from the hospital yet, but might have more luck on Wednesday as I have an appointment. The endo said that I can go this afternoon for the TSI test. I just wanted to check that it’s not better to do it early morning on an empty stomach ?
I had my follow up appointment in the hospital today. They have confirmed negative antibodies for Graves and that it is thyroiditis. T4 was over 50 and heart rate 170. Need to take 80mg propranolol a day and 20mg prednisolone. They will see me again next week. I have been told to have absolute rest and stay away from seafood, seaweed, kelp. Any other foods I should avoid and does the above make sense ?
Seafood ect for iodine content. So any foods with have higher levels of iodine. I’d also avoid caffeine & alcohol, you may already be doing so.Rest & relax the high levels are not expected to remain high. It will take a while to recover & get back on track once in range again.
glad to hear you have your diagnosis. So it looks like they want you to avoid iodine containing foods, read labels carefully it’s in all sorts. Sea salt is fine, not iodised table salt that can be treated. It can be in mineral waters, some regions have it in tap water (I think Derbyshire is one) here is a link ukiodine.org/iodine-in-the-uk/. I just googled foods high in iodine and so much came back that you’d have nothing to eat, so I guess it’s those particular ones they are concerned about for now. In the US, Dr Izabella Wentz is convinced that iodine in water has caused the thyroid illnesses prevalent in the IS today. Others are convinced it’s necessary for good thyroid health - a balance to be found. It’s in Levothyroxine that many hypothyroid folks take daily. I’m sure more tips will follow.
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