Question from a partner, my husband has hyperth... - Thyroid UK

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Question from a partner, my husband has hyperthyriodism

mochaflatwhite profile image
21 Replies

Hello everyone, new here and after some advice and insight. My husband has been diagnosed with hyperthriodism, he has been on meds for a few months now and his symptoms are still only ok. He has trouble sleeping but its getting better and his heartrate is still quite high ish. The other symptoms have improved a lot.

He is currently studying at home and I've noticed he does next to nothing during the day while I'm at work, its like living with a 40 year old teenager - and I struggle not to lose my head with it.

Is lack of motivation a side effect of hyperthriodism, I worry how will he cope when he gets a full time job. I don't know if his motivation is from the condition or habitual but I can't talk to him about it cause it sounds awful and I don't want to cause a fight. I don't mean to be critical and dismissive of the condition, I'm sincerely not meaning (please excuse my ignorance, I hadn't heard of this condition until a few months ago!). Any clarity or advice gratefully received.

thanks in advance

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mochaflatwhite profile image
mochaflatwhite
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21 Replies

Hi & welcome

I'm Hypo not Hyper but it would help if you could give some details about the blood tests and any other investigations your husband has had. Also the medication and dose he's on. If you have his blood test results could you add them to your post and also add the ranges in brackets. This will help people make informed comment.

Do you know if he had Antibodies tested and which ones?

If he doesn't have the information then he can ask GP for a print out of his results and/or apply to the hospital by email or letter for copies of his medical records. There is no charge now, since new rules 25 May 2018.

Has he seen an Endocrinologist? When is his next appointment? Is he happy for you to go with him?

mochaflatwhite profile image
mochaflatwhite in reply to Mary-intussuception

Hi Mary - thanks for your reply. I'm sorry I literally have not idea what his range is, I doubt he has even asked. but I'll ask him to get his results at his next appointment. He is on Carbinmazole 30 mg but it was 20 mg until recently. He has had two bloods so far and a chest xray which was clear. The second bloods showed a slight improvement to his results.

He hasn't seen the consultant yet, just his gp - we are still waiting for our appointment time, and I'm definitely keen to go with him and he wants me to go too.

The more I read about the condition the more complicated it seems - so many variables. I'm trying to be kind to him but its hard (I'm also 20 weeks pregnant and exhausted but "not as exhausted as him" apparently - grrrrr)

Mary-intussuception profile image
Mary-intussuception in reply to mochaflatwhite

It would be helpful if you could both learn more about Hyperthyroidism. You've come to the right place. You could also look on the Thyroid UK website. Hopefully some Hyper members will be along soon.

However - I would have thought that lack of motivation was more a Hypo symptom.

Would he give you a note authorising you / giving his GP authorisation to give you his print outs? Then you could just ask at reception - if refused then ask to speak to Practice Manager. Some parts of the UK can access their records on line. Phone and ask surgery how you go about this ?

You need to know what has been tested as he should really have TSH, Free T3, FreeT4 and Total T4 tested plus some Thyroid Antibodies (TPO TgAb and I think there is another he should have tested). Perhaps the Endocrinologist will do more bloods.

Some GPs just test TSH which is not enough.

Ask GP to test levels of Vitamin D, B12, Folate and Ferritin too.

Hyper might be diagnosed from low TSH and raised T4. Hypo from high TSH and Low T4. But Hypothyroidism caused by a problem involving the Pituitary Gland would give a low TSH and Low T4.

But, as you say, there has been some improvement in some of his symptoms since on medication.

He could phone and ask for details of what actual tests were done, the numbers and ranges - or wait till next appointment.

Is there any member of his family that has a Thyroid condition?

mochaflatwhite profile image
mochaflatwhite in reply to Mary-intussuception

Thanks Mary - we are definitely going to start learning more, I didn't know there was so much to know. His brother has type 1 diabetes but other than that - we are completely new to this. He is going to get the test results back from the gp and we are looking at the medicare results - now that i know more about what we dont' know I'm keen to know everything. Interesting that motivation is more hypo, tbh I was worried more than he is using this as an excuse to sit about but wasn't sure! Thanks so much really appreciate your support.

Mary-intussuception profile image
Mary-intussuception in reply to mochaflatwhite

He could be very distressed and exhausted and confused with either Hyper or Hypo. Functioning normally may not be an option at the moment.

Also it might take some time, getting his medication right and him starting to feel the benefit, before he feels anywhere near normal health.

At a time when you should be both very excited and happily looking forward to your Baby's birth and looking after YOU & Baby - he is so poorly. Hope you can get plenty of rest and somehow manage to look after all three of you for the time being (not to mention work !! ). Remember, you can always come on here to vent anytime. There are many caring people on here that understand what you're going through.

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to always get actual results and ranges on all blood tests. The only person who can really manage this correctly and fine tune as necessary is your husband. He has to take control

For full Thyroid evaluation he needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's or Graves plus TSI or TRab antibodies tested for Graves' disease

Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised with Hashimoto's or Graves

He is legally entitled to printed copies of his blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

What medication is he currently taking?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If TPO or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though they can also be raised with Graves' disease

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Low vitamins are especially common with Hashimoto's or Graves. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies and TSI or TRab antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

mochaflatwhite profile image
mochaflatwhite in reply to SlowDragon

Wow thanks SlowDragon thats really helpful, I had no idea (and as it turns out neither did he). We are looking into the private tests now, I think they will be really beneficial to know as much as we can. also getting the GP results too.

thanks both for your replies, really appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply to mochaflatwhite

Get results from GP first....,see EXACTLY what has been tested....and equally important what hasn't been tested yet

There's almost 100,000 members on here, because Thyroid Treatment is currently extremely inadequate

Self help is the way forward, starting with requesting full testing from GP of anything not tested

Getting full private testing of anything they can't or won't do

GP rarely can get TSI or TRab antibodies tested. But this should have been done by his endocrinologist

shaws profile image
shawsAdministrator

Welcome to our forum and I'm very sorry you are under strain at present due to your pregnancy as well as your husband's illhealth. He may not look too ill but his thyroid gland is pumping out far more hormones than he needs - everything has speeded up and he must feel awful. I'm hypothyroid and that's bad enough with my body not providing sufficient hormones which are needed to run my whole body from head to toe and heart and brain need the most.

Your husband has the opposite condition so his thyroid hormones are rushing round his body, raising his pulse as well as everything else. He has no control and his heart etc will be very active.

A member who has hyperthyroid will most probably respond too when they read your post.

In the meantime these are a couple of links which might be helpful

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

All blood tests have to be at the earliest, fasting (he can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

I am assuming it is the same procedure as for hypothyroidism and members will confirm or not if I'm wrong.

I hope your husband's doctor knows what to do as most on this forum are here because the doctors seem not be aware how best to treat us.

mochaflatwhite profile image
mochaflatwhite in reply to shaws

thanks for the insight into what its like to have thyroid issues, he can't really explain how he feels and all the literature is too clinical to know what living with it is really like. Thanks for the information too - we are definitely going to read even more about it but having the links is a great start in the right direction (and get the blood results from the gp as a first task)

shaws profile image
shawsAdministrator in reply to mochaflatwhite

Believe me - most of the members on here had a 'walk in the dark' because we finally discovered that doctors are the least capable of diagnosing and helping members.

Consider that before the blood tests doctors diagnosed us upon our clinical symptoms alone. Nowadays they know none as they stick by blood tests that are not as good as 'knowing clinical symptoms'.

For instance in other countries people are diagnosed as hypothyroid if TSH goes above 3 but in the UK they wait until TSH reaches 10 before prescribing and people may be very unwell by then. For me - I had to diagnose myself when TSH was 100 and bedridden but no one could tell me what was wrong, except a first aider who assisted me onto a plane on my way home and it was he who suggested it. I was even discharged from the A&E the morning of myself getting a blood test as 'probably viral with a high cholesterol' and cholesterol raised should also be a red flat.

Anything to do with the thyroid gland seems to be a very mysterious disease even if it is a common one.

healthline.com/health/hyper...

MaisieGray profile image
MaisieGray

It is not unknown that patients with autoimmune HYPOthyroidism aka Hashimoto's disease can be experiencing a flare of their illness when undergoing (inadequate/inappropriate) blood testing, and be wrongly diagnosed with HYPERthyroidism. The majority of cases of hypothyroidism is caused by autoimmune Hashimoto's, and the majority of cases of hyperthyroidism by autoimmune Graves' disease. The way to test for those is by looking at serum antibody levels, which if above range, will definitively rule them in, according to which show positive (although their absence doesn't necessarily rule them out). It is less common, but not impossible, for people to have the double whammy of both Graves' and Hashimoto's. If someone is wrongly diagnosed as having hyperthyroidism or Graves' disease, their antithyroid treatment will be wrong, so it is very important as has been said, to know what was or wasn't tested, and what were the results, with their respective ranges. Even where the diagnosis is correct, having the results each time tests are carried out, puts us in better control of our health and treatment.

This link explains about antibodies thyroiduk.org.uk/tuk/about_...

mochaflatwhite profile image
mochaflatwhite in reply to MaisieGray

Thats incredible (and scary) that this can happen - thanks so much for the heads up. We've really just listened to the GP and he takes the pill but never really questioned it. This feed and the advice as been more help than I ever thought it would be, thanks so much.

Coconutty profile image
Coconutty

Being hyper is exhausting, you’re literally running a marathon without even moving. I think there can be the mistaken idea that we’re running around here there and everywhere full of beans and turbocharged, but nothing could be further from the truth. It can be an effort just to cross the room. And then of course once we’re medicated we can easily slip into being hypo if we’re not closely monitored and meds adjusted appropriately, and that brings a whole other set of problems and additional exhaustion. You must always get copies of results, start a file, I can’t stress that enough, and make sure med dosing is based on FT4 and FT3 levels, not TSH (monthly bloods if possible in the beginning). TSH can stay suppressed for a long time, it’s the last thing to recover, and the number one mistake doctors make is running Graves patients into the hypo zone because they are obsessing over the TSH. It’s important to get antibodies tested, TSH Receptor antibodies (TRAb) is specific to Graves, and don’t come off meds unless TRAb is in remission. Endo’s do this arbitrary 18 months on meds and then stop and see what happens, but if you’re still TRAb positive it’s better to stay on a low dose of Carbimazole otherwise the risk of relapse is high. Graves resources I like are Elaine Moore and Eric Osansky, they both have webpages and books. Speak to him about how he feels because it may be he’s really struggling during the day but doesn’t want to worry you because you clearly have a lot on your plate already. I also think men find it harder to talk about these things.

mochaflatwhite profile image
mochaflatwhite in reply to Coconutty

thanks so much for your message - I actually showed him how you explained it and he agreed with all of it, its so insightful and helpful. Thanks so much. We've requested his GP notes and picking them up tomorrow. The detail and advice you've provided is so great, thanks! Talking about how much we could know about his condition has really helped him want to talk about it - like we can do this together rather than just live with it.

Coconutty profile image
Coconutty in reply to mochaflatwhite

I know other people have mentioned nutrients, this is so important. The ones the GP should be able to test are B12, folate, ferritin and vit D. As well as burning through nutrients from being hyper, you have the double whammy of that and malabsorption. Both hyper and hypothyroidism are associated with Gastric atrophy, low stomach acid, making it really hard to break out nutrients from food. B12 in particular, we can have autoimmune Pernicious Anaemia (PA) with antibodies to either parietal cells or intrinsic factor (PCABs and IFABs). The treatment for this is B12 injections not tablets, and it’s important you don’t take any supplements before B12 testing as they can skew the results. I explain all this not to confuse you (!) but just to caution against supplementing prior to baseline testing. I have both Graves and PA, it’s really common to have both.

HLAB35 profile image
HLAB35

I agree with all the great advice. Be very mindful of the fact that GPs have a one size fits all approach to hyperthyroidism and are not fully aware of the fluctuations in Hashis, for example. The thyroiduk main site has advice on mineral and vitamin deficiencies in both hyper and hypo conditions. Once you have up to date bloods it is worthwhile looking for some good supplements (especially when hyper) as some things are used up quickly, or a deficiency can soon bring its own debilitating symptoms. Look up Dr Carolyn Dean on how she deals with Graves patients with Magnesium... many of the nastier symptoms of being hyper can be partly attributed to escalating Magnesium deficiency.

mochaflatwhite profile image
mochaflatwhite

Hi, thanks so much, we've requested the results and will look into the levels and what has been tested and what hasn't been. The more we are learning the more determined I am to make sure we know as much as we can. Its amazing how much the thyroid affects so much, I had no idea, i never gave it a thought until all this happened. thanks for your message

mochaflatwhite profile image
mochaflatwhite

thanks - we are finding that, his gp is great and we are still waiting for the consultant appointment but there isn't a huge amount of information or advice from the gp. I had never realised about the increased metabolism using up his nutrients (he had a fruit smoothie the other day and he was a different man for a while - this might explain it!). We are definitely keen to look into his vitamin level too - thanks for the reference, I'll look up Dr Dean.

mochaflatwhite profile image
mochaflatwhite

Hi everyone - well we got the results from the gp and I'm not sure what I'm reading (i've tried looking at the links above but I'm getting all muddled). He has only had TSH and T4 levels tested twice.

TSH - first test=<0.03mU/L and a month later <0.03mU/L

TSH receptor antibodies - 40.0mU/L

T4 - first test= 63mU/L and a month later 26mU/L

Glucose - 5.3mU/L

he also got immunoglobulins but they are all in the normal range.

There are not results for vitamins :(

Sorry but thoughts??

PurpleNails profile image
PurpleNailsAdministrator in reply to mochaflatwhite

Do you have the ranges to include. They vary between labs.

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