Hi, Im new here, but need help for my daughter .Hashis with very,very high TSH(250) and low T4,T3?? Docs stumped.

[arend84ever]

Hi there, new here! My daughter has had Hashimotos for 12 years, with various doctors from yale and others trying to help her. She is now 24 yrs old and trying to get pregnant.She is on dessicated thyroid (120), has normal cortisol, and eats very healthy and takes good vitamins and minerals. But , got her bloodwork done and her tsh is at 257. Yes 257. Her t4 at .47 and t3 low as well. Has anyone ever had that high of tsh. Hers has always ran high. The lowest has only been to 75. Thanks

[Nanaedake]

Has she been tested for Coeliac autoimmune gluten intolerance or other autoimmune conditions that might affect absorption?

[Saggyuk in reply to Nanaedake]

Yes, I would look into absorption/stomach issues like Coeliacs also. especially if she's had to take a lot of vitamins also to keep her levels up while eating a healthy diet. Bear in mind the blood test for coeliacs is not reliable and can only be ruled out by endoscopy. Does she have any stomach issues?

I don't know what that dose of dessicated meds in relation to ones normally taken - are you sure she's been given enough?

She shouldn't take vits anywhere near her meds but I can't imagine that these would cause such bad levels - I took iron/vit D etc for years at the same time not knowing and although did affect my levels it never caused them to go as bad as these - she's very hypo. Also I'm assuming she's not always been on vits and other meds so if she's never came under 75, something is going on there in regards to not absorbing the meds.

Sorry to add that I also think she should hold on having a baby until it's resolved. Levels like that will increase the chance of miscarriage and cause fetal abnormalities as the baby need to get thyroid hormone from the mother.

Hope you get to the bottom of it soon

[Saggyuk in reply to Saggyuk]

Also get her levels of vits checked properly especially Vit B12, Vit D, Folate and iron (ferritin) if not already done so as many over the counter vits don't help much with vitamins and you can overdose easily on Iron and Vit D and folate so should always be done with testing

[humanbean]

Does she take supplements that contain biotin? With some testing machines and testing protocols, biotin is one of the substances that form part of the test. If the blood being tested has a higher than usual level of biotin thanks to supplementation then very peculiar (and totally unreliable) results can come out of the test.

healthunlocked.com/thyroidu......

[arend84ever in reply to humanbean]

really....she was taking biotin for hair growth? So that can mess up the test results?

[humanbean in reply to arend84ever]

Not all testing machines are affected by the patient taking biotin. Unfortunately it can be very difficult to find out what the testing machine being used is and what the protocol for testing is. It is considered sensitive commercial information.

The easiest way round the problem is for people to give up biotin for 3 days before testing is carried out because it can affect so many tests, not just thyroid function tests. The patient can continue taking biotin after the blood is taken for testing.

Giving up biotin won't necessarily make a difference - only a few testing machines use biotin and thus results can be corrupted. But unless biotin is eliminated for a few days before testing one can never be sure that the results are accurate.

The links I gave in that link give lots more detail than I could.

[jimh111 in reply to humanbean]

Thanks for this it is interesting. Biotin seems to give different result but it does raise the possibility of assay interference. I think you normally just get one result being unusual not all three, TSH, fT3 and fT4. I forgot to ask what are her symptoms, we expect obvious symptoms of hypothyroidism but this needs to be confirmed.

[jimh111]

She should hold off planning a pregnancy until her thyroid is sorted out, for the baby's sake, sorry for the bad news. Her blood tests suggest she is very hypothyroid. Has she ever been on levothyroxine and what were her blood test results? It would help if you could give the reference intervals (the numbers in brackets). Also do you have her results from when she was first diagnosed?

If she has only ever been on NDT she should try levothyroxine, it's possible she has a problem with NDT or the NDT is of dubious quality. I'm surprised the doctors can't help her, with such a high TSH and low fT3, fT4 I'd expect them to try higher doses and if that doesn't work find out why she isn't absorbing the hormone.

I have to ask this. Does she take the hormone regularly? Some patients forget and some are reluctant to take it, especially if they don't notice a quick improvement.

Her hormone levels really are low and she needs support to help sort it out, it must be having physical and mental effects.

[arend84ever in reply to jimh111]

I will try and get her numbers,she has them all, very organized. She was on levothyroizine but had no symtoms free. She then switched to dessicated a year later in 9th grade and then had symptoms relieved. They think she is on too much at 130 but I agree, I think she needs more. She is adament about taking her medicine, but, I just spoke with her and she was taking her prenatal at the same time, which I told her can block her thyroid because it is the raw prenatals and has iron and such also, other things that can block her thyroid meds.SHe is beyond frustrated. They freak out at her tsh, and nothing else, also her leptin, its at an all time high.

[greygoose in reply to arend84ever]

You mean she is taking her prenatals at the same time of day as her NDT, not leaving a gap between them? That could have a lot to do with it! If they contain iron, she should leave a gap of four hours. Does she take her NDT on an empty stomach and leave one hour before eating or drinking anything other than water?

Two grains is not a very high dose. It's equal to 75 mcg T4 and 18 mcg T3. Most of us take a lot more than that. Perhaps if she had and increase in dose, and left that 4 hour gap between her NDT and her prenatals, the TSH might come down, and the Frees might rise.

[Kitti1]

I cant begin to imagine how worried about her you are, my heart so goes out to you both. I'm sorry but I'm no expert compared to so many on here, but have they explore her pituitary gland ? Have they scanned it ect ?

[arend84ever]

I am worried, and feel so much for her going through this and them not following through .Thank you for your compassion. So grateful I found this site!!!! Its like every time the doctors say, ok, what did we do last time and what did we change? Its like she does her own doctoring, but they write the scripts and dont follow up. They are going to do an MRI for her pituitary. Also an ultrasound to check if her thyroid is even there.

[silverfox7]

I can't add any more but I do hope they can sort out what is happening soon. Please let us know how she gets on.

[jimh111]

Which NDT is she taking? Please note that I don't have any experience of NDT but I believe there are some that are prescription grade and closely monitored and others that are less reliable. Also, occasionally a patient can confuse something described as 'thyroid support' with NDT.

If she had a high TSH (and low fT4) with levothyroxine then the problem is very likely to be due to malabsorption.

A pituitary MRI would make sense if her TSH and her fT4 were high. The thyroid ultrasound will check if she has an abnormal thyroid, one with nodules or as you say one that has already shrunk into next to nothing. Neither of these tests make sense given her blood test results. I assume these doctors are being paid by insurance (as opposed to a national health system). They seem to be ording expensive tests without doing a methodical examination along with an intelligent clinical approach.

The doctors need to be looking at how much hormone she is taking and how much is getting into her system. The problem is likely to be caused either by something she is taking that inhibits absorption or perhaps more likely a gut problem that reduces absorption. (By the way, she should not have coffee around the time she takes her thyroid medication as coffee affects levothyroxine (and possibly NDT) absorption).