Thyroid UK
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My wife has Thyroid issues and I'm really desperate to help her as much as I can

Hello Thyroid UK users,

First a little background. My 35 year-old wife, my 1 year old daughter and I live in Leamington Spa.

After the birth of our daughter last January, my wife got increasingly lethargic (beyond the obvious sleep-deprivation that a newborn brings!) and weak.

After several round trips to the GP and blood tests, she was diagnosed with thyroid issues. Specifically - her TS3 and TS4 are very high, and her TSH is very low.

She is taking the following medications/supplements: Carbimozole, Iron supplements, Vitamin D supplements. She is also taking Citalopram - which is an anti-depressant as the whole situation has got her feeling very down.

It has been many months since the medication started, and despite an initialy (first few weeks) difference in her amount of energy, she seems to be right back where she started at best, and even worse at worst. She is currently off work, unable to care for our daughter and barely able to get up and down stairs due to lethargy, weakness of muscles and severely aching joints / muscles.

We are pursuing treatment as quickly as is possible with the NHS, but I just wanted to introduce us and reach out to the community here for any advice, or just similar stories to share (happy endings welcome!)

Thanks everyone,

-Ed

22 Replies
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Welcome to our forum and I am really sorry your wife has developed a problem with her thyroid gland. It can happen quite often during/after pregnancy.

Other members will respond soon. I am assuming your wife had hypERthyroidism, due to being given carbizamole. HypOthyroidism memers are prescribed levothyroxine

What she needs is a proper thyroid test (NHS usually wont do all of them).

The test should be at the very earliest possible, fasting (she can drink water). A 24 hour gap should be allowed between the last dose and test.

She needs TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

B12, Vit D, iron, ferritin and folate.

We have two private labs which will do all of the tests and I'll give you a link - just in case. These are home pin-prick tests and she should be well hydrated a couple of days before.

Hopefully you can begine to help your wife as she is too unwell, poor thing, having to cope and with a young baby too.

Always get a print-out of results with the ranges. Ranges are important for responses as labs differ and it makes it easier to respond.

Hopefully, with the advice from the forum, especially those who've been in similar situation will respond soon.

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Fasting and taking blood early in the morning is a fiddle to make hyPOthyroid results look worse and get prescribed more levothyroxine. If the patient is hyPERthyroid fasting and taking blood early in the morning will not only give inaccurate results it will discourage the doctor from giving adequate treatment for hyPERthyroid.

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Hillwoman,

You obviously didn't take my point. Vorneus' wife is being treated for hyperthyroidism with Carbimazole and advice needs to be tailored to that and the information we have now. It's not relevant whether a member's views represent mainstream medicine.

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I only referred to fasting and early morning blood draw. IF a patient was taking thyroid hormone they would need to leave at least three hours between their last dose and having the blood taken in order to avoid getting a false result from the assay. Ideally the blood would be taken half way between doses for a precise result. Ed's wife is not on thyroid hormone and so the issue doesn't arise.

Ed, It is very important that your wife does not stop taking her carbimazole before a blood test. Again it would be ideal to have the blood taken between doses, to get an idea of her average hormone levels. I'm not sure if you are in the UK. UK guidance is that hyperthyroidism should be managed by an endocrinologist, at least until the patient is well and stable. Hillwoman raises a valid point that the underlying cause is not known at the moment and it should be investigated by an endocrinologist.

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These are details of blood tests and Blue Horizon and Medichecks do home tests or can arrange for blood to be drawn nearby.

thyroiduk.org/tuk/testing/p...

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If your wife is or has bcome hyperthyroid, then carbimazole therapy is often first line treatment to see if the condition can be controlled, without surgery or radiotherapy to reduce or abolish the thyroid gland's activity. This however is a treatment set against a condition whose severity may be changing. That is, when carbimazole was first given, her state was at a particular level. If this has changed for the worse, the dose that was appropriate is no longer. So continuous TSH, FT4 and FT3 tests should be done until you know whether the condition has stablised enough to continue carbimazole, or whether things are getting to the state where surgery is need. Hyperthyroidism is a much more volatile state than its opposite and rapid changes can occur one way or the other.

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Thanks, diogenes for a clear explanation when dealing with hyperthyroidism.

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Hiya diogenes, just a question really as I don't know much about hyperthyroidism but was wondering can it also be possible that the meds have worked too well and could be hypothyroid too? Thanks :-)

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That can only be checked by testing regularly. Interpretation of results with carbimazole isn't easy because of lags in change of parameters after changing treatment. However getting FT3 down is important. TSH can lag making it doubtful as a diagnostic in these rapidly changing circumstances.

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Thanks for the info :-)

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Yes definitely needs to get tested again and see where's she's at now - a full thyroid panel as suggested is definitely better for a clearer picture.

Also ensure b12 and folate tested especially if had gas and air during birth.

Hope she feels better soon :-)

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Ed i feel for you and your wife.

Im in your wife's shoes. Im 38, bed ridden due to the fatigue. Even a short walk downstairs to make a drink leaves me breathless, and feeling like i ran a marathon. Its awful. Im on levothyroxine since may 2016 with not much improvement.

It really does effect the whole family. Im sending you and your wife my love. I'm sorry I've no advice but your story struck a cord with me. Im married with 3 children in their teens and the guilt i feel is awful and like your wife irs made me very depressed being stuck in this situation. I hope things get easier, your wife is very lucky to have such a supportive husband. Not many men would post on a forum to get advice.

Julie

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Have you had recent blood tests? Some people do not feel much better as doctors think that if the TSH reaches somewhere in range that's sufficient levothyroxine. It may not be for you as our TSH should be around 1 or lower if hypo. I doubt GP will test your FT4 and FT3 but ask anyway.

If you've not had B12, Vit D, iron, ferritin and folate ask for these too.

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Julie

Essential to get full Thyroid and vitamin tests.

Breathlessness can be low iron.

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

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Ive had so many tests. All private and nhs. I use Medichecks.

Vitamins, thyroid, etc... Im a pro with the tests lol. Had 4 lots done last year.

I dont have hashimotos, antibodies all normal. Hsd them tested 3 times. When i was diagnosed my tsh was 9.28, ft4 was about 14 (12-22) and ft3 is always about 5 (3-6).

My iron wasnt low last year, im breathless more down to the fatigue walking around. Im not breathless any other time. Its just how fats my heart races and how fatigued i feel. It all hit again towards the end of kast year. I had some kind of anxiety breakdown l'd hit some stress in my life and my regular anxiety suddenly got worse. I have ptsd as i was attacked by my brother in 2012 and lost all my family as a result of not forgiving him. All a huge trauma. Ive had anxiety issues since. Anyway it hit hard in November and for 10 weeks i lay on my bed shaking having 12 hour panic attacks, terrified. Id never had such physical anxiety. It was terrifying. I reached our for therapy but it made me frro worse so i read a self help book and things calmed but ever since that debilitating anxiety for 10 weeks I've been left fatigued beyond belief. Im guessing due to deconditioning from being so bed ridden wigh all that anxiety and thr onslaught of all that panic. I was stuck in a constant fear state for 10 weeks it was hell. Im guessing it csused my cortisol to spike and effected my thyroid too. Its since that anxiety ive struggled with the fatigue again.

I've been on levo since may 2016. Im on 75mg. Due a check up soon on my thyroid bloods.

Thanks

Ju

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Welcome to the forum, LilLibby.

Please write your own post and members will try to help you. It can be very annoying to receive email and on-site notifications to replies which have nothing to do with the original post.

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I wish my ex husband had sought out help for me. We probably wouldn't then have divorced after 16 years of marriage. Congratulations vorneus for taking action.

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A nutritional doctor told me that when a woman is pregnant the baby takes the vitamins & minerals it needs and this can leave the mother deficient. He also said that if you sort out any deficiencies then any medical problem will present more clearly.

Do try to get vitamins and minerals tested. Thyroid meds work better once these have been sorted out.

Unfortunately most GPs have very little training in nutrition, so you may not get much help there. You could try a member of the British Association for Applied Nutrition and Nutritional Therapy (BANT).

This is their page for finding a practitioner near you

bant.org.uk/bant/jsp/practi...

Well done, you, for being so supportive for your wife.

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Firstly the anti depressants is tge first thing she needs to slowly wean off as they are not good for thyroid patients

Without her latest actual blood test results ( always get the actual figures and ranges and start a file ) its hard to tell but it very much sounds like she is taking too much carbimazole and thus between that and anti depressants is now underactive (hypothyroid)

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RFU,

Do you have a link to support that antidepressants are not good for hyperthyroid patients?

This link finds SSRIs don't affect thyroid function in depressed hypothyroid patients ncbi.nlm.nih.gov/pubmed/195...

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I am looking for a link but i have seen at first hand in both my husband and daughter and several people i have helped the effect antidepressants had on them and that it did nothing to help their nypothyroid ...antidepressants are often made from flouride which affects the thyroid and they can be hell to get on and even more to get off

Obviously whats needed is a much better appreciation by medics of the full effects of thyroid disease on the whole body especially since the thyroid controls every hormone in the body and Prof Lant said there were something like 40 in the brain alone

I sure know the effect carbimazole had on my husband and the fight i had with his doctors when he was on too much and all the subsequent battles to get the treatment he needed to get well

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Thank you all for such a wonderful response to my post - I'm overwhelmed by the amount of support that you have all shown in such a short period of time.

In addition to the responses here, I have received several private messages sharing stories and giving support and advice - all of which I am immensely thankful for.

I will sit down with my wife to read through all the information and advice that has been given here to formulate a plan for the next step - which to me at the moment seems like the full suite of tests a number of you have suggested.

Thank you all again,

-Ed

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