Hi all, right I expect this will be a little different as I'm not the sufferer so bear with me!!
My wife has an under active thyroid, I knew about it from the day we met and it's never really been an issue. Blood tests and medication (levotheroxin ( or however it's spelt!!)) have kinda kept on top of it, but the last 12 months it just doesn't seem to be helping, the last blood test the dr actually lowered her daily dose. The tiredness and lack of enthusiasm for anything I think is probably the biggest issue as even after being in bed for days at a time she's no better and I'm afraid on a probably slightly selfish note it's having a knock on effect on me & our relationship. I don't quite know what to do, is it worth getting her to do a private test to confirm what the drs have said as every time I try and get her to go back I just get 'I've had one, I'm just hassling them...' or is there another route to see if there's a better solution??
We haven't been married quite 12 moths yet and I want to try and get on top of this so we can actually start living a bit of a life together rather than spending so much time apart.
Hope this makes sense, and all help (and listening ears!!!) are much appreciated.
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Worried_hubby
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She could do with getting a full picture and can get blood tests to do from home, finger prick which I do or venous.
Thyroid uk website id a good place to start with education and Blue Horizon and Medichecks both do good thyroid and vitamin tests. I use both depending on who has special offers on.
TSH, FT3,FT4 ANTIBODIES, B12, FOLATE, FERRITIN AND VITAMIN D .
thyroiduk.org/tuk/testing/p... is the link to thyroid uk page on private testing. If you do decide to go this route you can get advise and guidance if you post them on forum.
No Levothyroxine for 24 hours before doing test. Tests should be around 8am and fasting, water only but make sure well hydrated day before. Oh and no biotin or multivitamins multi b vitamins with Biotin in for 3 days before.
What's the deal with vitamin supplements?? She currently doesnt take any. Also has raynoids, (low blood pressure/coldness in fingers/toes) and is on medication for that but gp said that it shouldn't affect the levotheroxin.
Does she take that medication at least two hours away from levo?
Does she take her levo on an empty stomach and wait an hour before eating?
Does she have her blood test early in the morning and fasting, leaving 24 hours between her last dose of levo and the blood draw?
Sorry for all the questions, but the little details are so important.
The problem with biotin is that it can skew the results of the thyroid test. I imagine that her doctor lowered her dose because her TSH was below range. Well, that could be because of biotin, if she takes it. Or her TSH could have been low because she had her test in the afternoon, or had eaten. Doctors don't search to know why it's low, they just have a kneejerk reaction and slash the dose! We have to be careful.
She really does need to get copies of her blood test results. She needs to know exactly what has been tested, and exactly what the results were. And, she needs to keep records, so that she can see what levels correspond with what dosage. I'm afraid it's hard work being a hypo patient.
Can you get her blood results for all of the following:
TSH
Free T4
Free t3
TPO and TG antibodies
B12
Ferritin
Folate
Vitamin D
If the GP only tests TSH that really doesn't give you enough information about doseage. If the GP won't do the above tests, you can get them done privately through Blue Horizon or Medichecks - see Thyroid UK website. (Not HU).
It's very important to get the dose correct (and it sounds as though it is not) especially if you want to start a family.
I had been looking at the 6 test kit through medichecks, think it was £70 but thought that it would be well spent!! If this comes back with different results to the gp, what do we do?? Will they then do their own tests, can we get correct medication on prescription or will we have to source that privately as well? The drs never picked up her thyroid originally, it was actually a friend with the condition that diagnosed her!!!
Was aware about the effects on having kids, safe to say the bit before that is suffering somewhat at the mo... I have 2 from a previous relationship and as much as we want kids I worry if she'd ever cope at the mo as I've been there before and am well aware of the tiredness/fatigue that a fit and healthy person has to deal with!!
Fortunately I was never bed ridden, other than real bad migraine. So I worked raised the kids and cared for both sets of parents ... just doesn't leave much energy for socialising . I agree more thorough blood tests and maybe see if GP would ref to specialist. Don't be blinkered it may be other stuff other than thyroid. Also relationship counselling to keep clear communications . As your role can change from feeling like a lover to a carer... not good.
You would be better off with the 11 test bundle which costs £99. It includes testing several nutrients as well as thyroid.
People with low thyroid usually produce too little stomach acid. The result is that the gut can't extract nutrients from food very well, and so low nutrients are very common.
Doctors get almost no training on nutrition and assume that it isn't important, but the number of symptoms we can get from low nutrients is incredible. Getting levels of minerals and vitamins up to optimal makes a massive difference to how well we feel.
The other big issue is that doctors think TSH (which is actually produced by the pituitary, not the thyroid) is all they need to know about people with hypothyroidism. But the actual thyroid hormones, Free T4 and Free T3, also need to be at a good level.
It depends on the GP. Some accept private tests; others insist on doing it all again. It's important that tests are done as early as possible in the morning, fasting (water only) and without taking levo for 24 hrs (take after test). She may get taken more seriously if she says she is trying get pregnant (whether that's true or not). If necessary, louise.roberts@thyroiduk.org.uk can send you a list of doctors with a clue and you can see if there is one in your area.
Welcome to our forum Worried Hubby and we have had a few husbands enquiring as they are at the forefront with a wife who isn't quite herself and seems very unwell.
I was more unwell when diagnosed and given levothyroxine. I could do nothing and was forever in and out of A&E with palpitations.
I am well now thanks to TUK and this forum is very helpful to many.
You need the tests detailed by fibrolinda as I am sure GP will only do TSH and T4. which aren't so informative. That's what they've been directed to do.
Levothyroxine is also called T4 - a thyroid hormone but it is inactive and has to convert to T3. T3 (liothyronine) is the only Active thyroid hormone required in our billions of receptor cells and if we aren't a good converter we remain unwell. T3 is like the energy in a battery, if it's flat nothing works in unison. Hypothyroidism affects us from the top of our head to the tip of the toes.
Why we mentioned supplements - take B12 for instance - if we've been supplementing it can mask pernicious anaemia for instance.
The blood test has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take it afterwards. This helps the TSH to be at its highest as GPs are apt to adjust hormones according to the TSH, which is from the pituitary gland - not thyroid gland.
Always get a print-out from the surgery of the results with the ranges for your own records and post if you have a query.
Many people say they are intolerant to levothyroxine. If your wife may be sensitive to levothyroxine, she could try taking an anti-histamine tablet one hour before levothyroxine and see if it makes any difference. If she feels better she needs to switch to another make of levothyroxine to see if that benefits her.
She has my commiserations as I know more or less how unwell she is. I was surprised I was far worse than before being diagnosed.
Ask GP to test B12, Vit D, iron, ferritin and folate as deficiences can also cause unpleasant symptoms.
Thank you!!! It's the sheer feeling of helplessness that hurts, I'm 32, and she's 27 and safe to say neither of us are living the appropriate lifestyles!!!! I don't know what tests the gp have done so think a set of private ones are proabaly the first step ( if I can get the boss to play ball!!) and then go from there. What will be the next step if they come up with something that the gp hasn't picked up on/tested for??
What you do is a fresh post detailing all the results of the tests, plus the ranges (they are surrounded by brackets). Members will respond. None of us are medically qualified but through our dire experiences we know more than most Endos or doctors.
There are also alternatives to levothyroxine but we will go into that later. Some people settle down with levo when it gets to an optimum dose - that means the patient feels much better with no clinical symptoms.
Unfortunately if we have symptoms the doctor is apt to prescribe an alternative medication rather than increase levo slightly.
All blood tests have to be at the earliest - GP doesn't think timing matters. They only take account of the TSH and T4 and I doubt they know that the TSH is highest early a.m. and drops throughout the day. It may mean the patient isn't given an increase or dose is decreased. It is a minefield..
If your wife's test was fairly recent, ask the surgery for a copy of the results, then you can see which tests were done. The normal range for each test will be in brackets next to the actual result of each test. I asked my GP to include a T3 test, which she did. Try your GP first before you go spending money unnecessarily.
Can you explain to me why no Levothyroxine should be taken for 24 hours before a blood test? Surely this will not give a true picture ? If you don't take your tablet on the day of your blood test, the TSH would be higher than the days you did take it. A high TSH means that you do not have high enough blood levels of Thyroxine and your GP may then increase the dose. In my own case, I was feeling ill and had many of the Levo side effects. After my blood test, showing a low TSH, my GP lowered my dose of Levo and I'm now much better.
TSH varies according to time of day, and is at its highest around 2am and at its lowest around 2pm. The time that someone can get a TSH test done to give the highest result during normal surgery hours is as early in the morning as possible, and definitely by 9am at the very latest.
Doctors use TSH as the most important measure they can test to determine dosage of thyroid meds such as Levothyroxine. A low TSH could delay a diagnosis of hypothyroidism or could get someone refused a raise in dose when it is justified, or it could get someone's dose reduced without justification. So getting the highest possible result is to our advantage. The other thing is that consistency in timing helps in comparing results from one test to another.
It is also a good idea to fast before a blood draw (apart from water which should be drunk freely), from the evening before until after the blood draw - a total time of 10 - 12 hours maximum. This is alleged to help keep TSH high. Whatever time span you use for fasting use it for future testing as well, again for consistency when comparing results.
The other consideration with fasting is that sometimes your doctor may include other tests to be done which are best done fasting e.g. fasting glucose. If you've always done tests that way then you won't be changing the conditions for that one test.
TSH may vary according to time of day, but overall it changes relatively slowly with dose changes or missing doses, so having a test after having no Levo for 24 hours will have little impact on TSH.
If a thyroid function test is done and includes a free T4, this is most definitely altered by taking Levo. I always forget the numbers... I think a peak of Free T4 is detectable within 2 hours of taking Levo and the level stays high for several hours afterwards.
The purpose of delaying Levo for 24 hours is again because of consistency and comparison from one test to the next. But also, it is perfectly possible for Free T4 to go over the range (briefly) after a dose of Levo. But most of the 24 hours after taking Levo the level will usually be well within range. But if the doctor sees a high level of Free T4 just because it has been taken fairly recently, it could get the patient an unjustified dose reduction.
So, the day before a blood draw take your Levo 24 hours before the blood draw, even if it isn't your usual time to take it. Then on the day of the blood draw take your Levo after the blood has been taken.
From then on, make sure you stick to the same conditions i.e. Levo 24 hours before test and no more till after the test, fast, drink plenty of water, test as early as possible, and definitely by 9am at the latest.
The daily rhythm of output of thyroid hormones and TSH (which is a pituitary hormone) is discussed in this link. It is worth taking a copy of the PDF version of the paper.
Hi Worried_hubby . Definitely agree with what humanbean has said. The Thyroid 11 tests will give you a great understanding on what to do next.
Is it possible for your wife to get hold of her previous blood test results from the GP? You are legally allowed to do this under the Data Protection Act. Some surgeries may make a small charge of a £1 or two for paper/ink etc. You will need the actual results and the ranges (given in brackets after the result). The ranges are important because it can vary from lab to lab.
Once you have these, if you post them up in a new thread then members can comment if things are not quite right with your wife's thyroid levels. Ditto for if you go with Blue Horizon or Medicheck tests.
If things are not right we can advise (we might not be medically trained but have been through "the experience") on what to do in response to dealing with the GP. I'm afraid so many can be out of their depth or out of touch in dealing with thyroid and some endocrinologists seem to be a bit problematical too! There is not enough done in medical school, apparently only a few hours are on the subject of thyroid disorders. There seems to be a consensus that dosing by TSH level alone is the way to go and if you get a suppressed TSH that is very very dangerous and the levo dose must be reduced........this is really not the case.
It does not really help that the NHS only really promotes TSH testing, occasionally T4 and in certain circumtances T3, probably the most important one once you are on treatment. Even then a doctor might request a T3 and the lab refuses to do it. It's all crazy!
There are some helpful papers that can be shown to the GP from eminent and experienced endocrinologists to favour your wife's treatment and get her back to having some zest back again.
edit// Shaws has beaten me to it and also given you great information!
I've tentatively just mentioned to her about getting private test done when I took her lunch up whilst she was awake and she seems approachable to the idea, said she thinks the gp has only done a tsh test but not got the results.
I think once your wife finds out that she is not the only, mainly women, who have had a bad deal by the doctors due to the modern method of diagnosing. i.e. blood test and only when (in UK) it reaches 10 will you get a prescription. That is if you ever get a blood test. Not everyone who complains will have test done for hypo despite clear clinical symptoms.
What dose of levothyroxine does your wife take. Usually when first diagnosed it is 50mcg levo with a blood test every six to eight weeks with a 25mcg increase until we feel well. Many doctors stop increasing when the TSH reaches a certain level but the patient still has clinical symptoms.
Lowering the dose according to the TSH is not always helpful unless patient complains of very high pulse and high temp.
If you can get a print-out of her most recent result with the ranges post on a new question.
Levo should be taken first thing on an empty stomach with one full glass of water. Tablet can stick in throat and wait an hour before eating. Food can interfere with the uptake of the hormone.
or Levo can be taken at bedtime as long as stomach is empty, which means a gap of 2.5 to 3 hours after a meal.
If deciding on a bedtime dosing, on the evening of the blood test miss this and take after blood test and night dose as usual the same day.
Well that's good that your wife might be amenable to the notion of private testing. Unfortunately hypothyroidism if we are not optimally medicated can give you the most awful feelings of feeling completely powerless and utterly miserable. At one time before diagnosis I was too scared to answer the phone because I didn't like dealing with strangers and their questions! I also didn't have the impetus to go out shopping and felt constantly fearful and overwhelmed. I had insomnia but could sleep for England during the day but never felt restored. This was totally not me, I had no idea that a failing thyroid could do this.
Have to say, you are being a very thoughtful and kind husband. You both deserve to have a happy happy life don't you think? You will be doing the right thing if you have the private blood test done, it will tell you so much more.
Her Fitbit tracks sleep and it's saying that she is only getting a couple of hours 'good' sleep a night with the rest being disturbed and no matter how much catch up she tries to get during daylight hours it doesn't seem to get on top of her tiredness.... I worry for her, and us!!! Not that I'm 'needy' but I miss her company having to spend so much time on my own, just want to try anything we can to put things right 🙂
It sometimes takes a little time to get the dose right (titration) and any nutritional or mineral deficiencies addressed. You can eat well and you might be shocked at any deficiencies. As you might have read elsewhere, our food is often grown in depleted soils so what would give us good nutrient levels in times past is not necessarily the case now. Many of us are deficient in vitamin D as well which can cause loads of symptoms because bodily processes are unable to work properly.
So many of us have had to seize control of our own health and fight our corner, you know the quote "knowledge is power" well that's what this is about!
Maybe your wife might at some time feel like joining this Health Unlocked group too. So much information here and everybody is very kind and helpful, even if you want a bit of a rant about things or are worried about something or if you want to say things are going well.
This site has really been sooo great for those of us who have experienced zero feedback and guidance from our GPs. The difference in how I feel from even this time last month is like nite and day thanks to the critical info I've gained here. I've learned to understand my blood test results and finally clued in to my deficiencies in nutrient levels. Huge stuff! (We are often plagued by gut issues and malabsorption problems that are reflected in those nutrient levels). You've come to the right place for education and support! It will be very interesting to see your wife's private lab results if you can get them asap. It does require a bit of the "take the reins" approach in order to fight our way out of the gray zone we are sometimes stuck in upon arriving here. A good partner is a great help 🙂
And do check this link on the right form of magnesium to take. It's a good way to enhance sleep:
It's great that you are taking steps to help your wife, this group will definitely help you both, it's been a life saver for many of us! I feel for you both, I know that for the last 2 years I have been an absolute nightmare to live with, my poor husband cops a lot of flak when I am under medicated due to mood swings and exhaustion. I can tell you though that it can improve but it may take time, patience and a lot of self help as doctors are pretty crap when it comes to thyroid disease. Be patient with your wife, remember she can't help it and that if you work together you'll get through it
I would suggest she gets a private adrenal gland test done as it sounds like her adrenals are fatigued. I was treated for thyroid for 15 years and got worse and worse until no amount of rest made any difference . feeling 90 % better after 6 months of treating adrenals ( GPs won't help you need Private Specialist advise Dr Barry Peatfield is very knowledgeable info this area ) Good luck
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and Blue Horizon and Medichecks both do good thyroid and vitamin tests. I use both depending on who has special offers on.
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