There's no such thing as 'normal'. It just means 'in-range'. But the ranges are so wide that you're not going to feel the same with your result at the bottom as you would with a result at the top. This is something doctors can't get their heads round. They think that if it's in-range, it's fine. Not necessarily so.
Fine is an opinion, but if you don't feel fine, then it means that your labs aren't fine, either. Everyone is different and we all need different levels of thyroid hormone. And, just saying 'her levels are fine' tells us nothing. We need the numbers: results and ranges. Does she have them? If not, she should ring the surgery and ask them to print out her results and she will pick them up at their convenience. If you're in the UK, it is your legal right to have a copy. Post them on here, and then we'll know what we're talking about.
Thank you for the reply, it's just that she has an appointment tomorrow and I just thought I'd see if it was worth her asking for a change in her dosage to see if it helps.
She's waited 3 weeks for it you see. Do her symptoms seem like a dosage change could help.
Probably, but you do need the actual results and the ranges for TSH,
FT4 and FT3 which is the active hormone. TSH should be very close to 1 or below and the other two at least in the top half of the range.You also need B12, D3, Ferritin and folate results.
Well, she could ask for one to see if it will help. But, without seeing her results, no-one can say for certain that it will, you see. Given her symptoms, it could be one of several problems: she's under-medicated; she doesn't absorb well in the gut; she doesn't convert very well; she doesn't absorb at a cellular level.
Just out of interest, how does she take her levo? Does she take it on an empty stomach, leaving at least one hour before eating or drinking anything other than water; and at least two hours before other medication or supplements - sometime four hours?
And, how does she do the tests? Early morning - before 9 am - after fasting over-night, leaving a 24 hour gap between her last dose and the blood draw?
All these little things that nobody tells you about can have quite an effect on how well the levo works, and how well you are treated by your doctor.
Will you be going with her? It would be a very good idea if you could. Doctors tend to be less patronising, dismissive and condescending when the husband is in the room. She's more likely to get her increase if you back her up.
So, while she's there, she should ask at reception for print-outs of her previous results - don't ask the doctor. Most doctors prefer you don't know! If she gets an increase, she should make sure she goes back for a retest six weeks afterwards, and asks for a print-out of those results, too. She should keep her own records, noting exactly what she's taking and how she feels. I'm afraid you just cannot trust doctors to act in her best interests where thyroid is concerned - they might, but they usually don't.
Thanks for the lengthy reply. With regards to the time she takes the levothroxine it's usually around the same time in the morning however sometimes she may have had cereal or a coffee around or at the same time.
She also takes it along with other medicines sertraline and the contraception pill.
The time the bloods were done were mid probably mid morning to afternoon and certainly with no 24 hour gap and quite probably after already taking her dose for the day.
Could this make a big difference to the results? Do they need to be taken after a 24 hour fast and at least 24 hours after the last dose?
OK, well, I think you've answered your own question, then. She won't be absorbing much of her levo. Thyroid hormones should be taken entirely on their own, with just water to wash them down. The coffee will be blocking the absorption, as will the milk in the cereal. She should wait at least one hour before eating or drinking coffee, then two hours before the other medication, and four hours before taking her contraception pill.
Having blood drawn at mid-morning will give you a lower TSH than if it were taken early morning. TSH is highest before 9 am and drops throughout the day and after eating. But, an over-night fast would do - 24 hours is a bit much! Have breakfast after the blood draw.
Taking her levo on the morning of the blood draw will make a huge difference to her results - if her doctor tests FT4, but we don't even know if he does. All you will be testing is the dose she just took, not what is normally circulating in her blood. So, put the two together and bang goes your increase in dose! She should leave 24 hours between her last dose and the blood draw.
So, all in all, I think she should start taking her levo correctly for six weeks, then get proper tests done, before asking for a rise in dose. Because, at the moment, we have no idea what her levels are.
Just read that you said to radd that she only ever has her TSH tested. That is 100% wrong. Her TSH could be perfect - if there is such a thing as a perfect TSH - but her actual thyroid hormones in their boots. TSH is a pituitary hormone.
Could be either, depending on the reason(s) for her meds not working. Also, whether her doctor is open to discussion or just ruled by TSH dosing.
Supplying test results complete with ranges (numbers in brackets) will encourage members to comment. Meanwhile optimal nutrients are vital for thyroid hormones to work so has she had VitB12, folate, ferritin & Vit D tested ?
Get your wife to ask for these to be tested as they are commonly deficient in people with low thyroid hormone.
Re TSH, stands for thyroid stimulating hormone (not even produced by the thyroid gland but the pituitary) & is our GP's gold standard blood test for evaluating the amount of thyroid hormone being produced. Unfortunately it does not take in consideration the many factors that might impair good thyroid hormone function.
Such as whether conversion of T4 to T3 is impaired, if there is receptor resistance, adrenal insufficiency, iron & nutrient deficiencies or the TSH feedback loop is not functioning properly, often becoming blunted in people with long term low thyroid hormone or in those who have supplemented for a long time. It also won't tell you if your thyroid gland is being attacked by antibodies.
For a clearer picture of thyroid function, your wife will need TSH, FT4, FT3 and antibodies TPOAb & TGAb testing. Members whose doctors are uncooperative use private labs. Post results for members to comment.
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your 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.
Just testing TSH is completely inadequate
For full Thyroid evaluation your wife needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
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)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Suggest you go with her to see GP and request further testing including thyroid antibodies, FT3 and FT4 and all four vitamins
Very unlikely to get FT3 tested on NHS. Or TG antibodies if TPO antibodies are not raised
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once your wife finds a brand that suits, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
They don't. But, if they're high, it means you have Hashi's. And, if you have Hashi's, you will become hypo, and being hypo you will have low T3 which will mean you have low stomach acid, which means that you cannot digest your food properly and absorb nutrients.
I'm not quite sure why - or even if - having Hashi's makes all that worse than being hypo for other reasons, but if you're hypo, it's as well to assume you have low stomach acid and get nutrients tested.
Plus, it's a vicious circle, but having low stomach acid means your B12 will be low, and having low B12 will mean your stomach acid is low. We need good levels of both T3 and B12 to have good levels of stomach acid.
And, if your nutrients are low, it will mean your body cannot use thyroid hormones correctly. Which is why we always advise testing vit D, vit B12, folate, ferritin as a base line. Then, if they are low, you need to supplement them and take their cofactors - like vit K2-MK7 and magnesium with vit D, etc.
Does your wife have high antibodies, do you know? They probably haven't even been tested, because doctors don't think they're important. Well, they are and they aren't. If they are high, then it means you have Hashi's, and if you have Hashi's, you need to know. But, the antibodies themselves don't actually do anything terrible. But, it's all far too complicated for a simple doctor to understand! lol
When hypothyroid our gut is frequently affected, low stomach acid is very common.
High stomach acid is required to cleave nutrients from food
Hypothyroid patients frequently have extremely low vitamin levels
Very important to test vitamin D, folate, ferritin and B12
This could be done by GP now.
If vitamins are low they frequently need supplementing to help improve the way thyroid hormones are used
Thyroid disease is as much a disease of the gut at the thyroid.
Don't be surprised if GP is unaware of gut connection
Levothyroxine is a very fussy medication and must be taken on its own
So she needs to change the way she takes her Levothyroxine, perhaps taking it at bedtime (at least two hours after dinner, and an hour after anything apart from water)
Then getting FULL Thyroid testing 6-8 weeks later. Very likely need to do so privately via Medichecks.
Make sure to get blood draw as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Agreed with Greygoose re levels and GP’s. Has your wife had her Vitamin D level checked? I doubt it somehow. I took private blood tests 5 weeks ago and have found myself to be virtually deficient. Some of the symptoms of low Vitamin D can be attributed to Hypothyroidism. I also suspect that the GP did not test the T3 level which is most definitely needed.
HI, I think it is really cool that are supporting your wife. Y'all are lucky to have one another. I am not a Doctor but I can share what happened to me just this year. I was on Levothyroxine at 75mg a day. I had everyone of the symptoms that your wife has. I told my doctor the she was killing me and that the drugs were actually giving me the disease. She said your numbers are coming down so I think we are making progress. Another month of mood swings, weight gain and other insanity goes by. I go to an Endocrinologist. He tells me that I need to be on Synthroid brand because the generic form Levothyroxine sometimes causes these problems-especially the joint pain! So 4 days into the Synthroid brand at 50 mg the joint pain completely disappears and hasn't come back. However, my numbers started going back up again so now I am on 75mg. Synthroid. My hair doesn't feel like burnt grass anymore and my nails have stopped splitting (sort of) but I still have symptoms. Do go to the Synthroid site. They will explain it better than me and I am not a MD. I wish you both all the best.
I feel very pleased your wife has your support that’s a massive help for any woman going through this nightmare
6 months ago I was in similar situation -saw private Consultant started taking Levo at night and HRT in morning then lunchtime took Feroglobin( iron and B12 capsules)every other day vit D3 Bio-seleniumwith ) Zinc and cod liver oil and occasional glucosamine
Also started using rubber gloves when using all hair products with thickeners( which I was told can split nails?)
Pleased to say weight still a couple of stone over but nails and hair and joints better and growing better ( ps also been using rimmel stronger nails varnish)
Don’t know which thing helped -could just be more sun but hope this also helps her
Hi, just take the advice of the knowledgeable ones on this forum, read as many posts and answers as you can- educate yourself then you can start to educate your Doctor, as many of them haven't got a clue, mine certainly didn't but he's definitely improving 😊
I second Gingernut44’s comment 👍. I was absolutely clueless on this subject and about test results when I was first diagnosed. I have learnt quite a bit since being on here. Just wish I could go back to the beginning and start again with more knowledge.
I too am on 75 a day and feel crappy most days sorry to be blunt I’m classed as in the overweight mark according to my doctor all across my middle can’t seem to shift it and have now got high cholesterol and carpal tunnel and feel exhausted all the time I’m waiting to hear from one of the doctors today to ask if I need to go up 25 even tho my T-sh blood cane back normal I’m going to ask for print outs of my thyroid tests over the last 3 years to see the changes if any maybe that is what your wife should do too
Huge difference between being 'normal' and being optimal. Remember... years ago, doctors dosed thyroid meds based on body temp, heart rate and, most especially, the alleviation of symptoms and how the patient was feeling. I take NDT but my sis takes levo and converts it just fine. Recently, she noticed that when her doc increased her levo dosage by just a small amount she suddenly felt fabulous; energetic, optimistic, life was good. She just dared him to decrease her meds. lol So, your wife might well do better at a higher dosage of levo. Certainly worth a try. Just increase slowly, small increments and track body temp and heart rate.
Hey everyone, thanks for all of the messages in this thread I really appreciate it.
We missed the docs appointment today, long story short I took a blow to the head, went unconscious and had to go a&e. New one booked for the 30th which might work out a bit better.
We have been out today to get a weekly pill box, we are going to ensure the levo is taken properly with the correct break between food and other meds as suggested in this thread.
We've got some multi vits just to try and see if they help and will be getting a fasted blood test with a 24 hour break between the next dose done 5 days before the appointment.
I know it's not long enough but we might see some improvement in the 3 week wait.
Oh and we'll be going the gym starting Wednesday.
We're going to see how the Mrs reacts to correct administration of her meds and hopefully be a little more informed once the appointment arrives.
If that fails we'll be ordering a proper blood test from one of the links posted in this thread.
So thanks again for all of the help and any tips to follow until the 30th please do let us know.
Oh my! I think you're jumping the gun, there. The gym is really, really not recommended at this point. She has never taken her hormone correctly, so she's still going to be very hypo, and strenuous exercise will make things worse! Rule number whatever: not dieting or exercise other than gentle walking and/or swimming, until T3 optimised.
As for multi-vits...
You shouldn't be taking a multivitamin anyway for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results.
Plus, she should not be taking anything much until tested. You absolutely, 100% need a base-line. Some things can do more harm that good if you take them when you don't need them - e.g. vit D and iron. With B12, you need to know how low it is, in case it's so low it warrants being tested for Pernicious Anemia. If she starts taking B12 before getting the test, it will be skewed any you won't know of possible PA.
Can you take the multi back to the shop and get your money back? I would if I were you. I certainly wouldn't take the thing.
If it's just vit Bs, it's a B complex, not a multi. But, is the B12 methylcobalamin or cyanocobalamin? And is the folate folic acid or methylfolate. You really need the methyl forms.
If they are the methyl forms, then she can take them BUT not before she's had her B12 and folate tested.
What form is the vit D? And how much? She must get that tested, first, too.
I understand her desire to go to the gym - well, I don't, but that's just me! lol But it really is not advisable at this point. It could make her much worse.
Yeah it is just a B complex, they are cyanocobalamin and folic acid. Both the B Complex and D are in pill form.
The b12 is 2.5
The folic acid is 200
The vit D is 12.5
It's not a problem I will just tell her not to take them if they could do more harm than good.
Well she is reading this anyway it was her who got the vitamins haha
As for the gym I will make sure she takes it easy however she is determined to go.
I've also just found out that she has only been taking 50mg of levo for the past month too. She just admitted it to me after reading all of this.
By the way her 50mg and 25mg are both different brands for some reason because I have personally taken it upon myself to make sure she starts taking her meds properly now.
Should we make sure they are from the same brand next time we get a repeat.
Kind regards,
Stephen.
P.s. thank you so much to not just you but everyone sharing advice within this thread it's been a real eye opener.
Especially the blood testing and actual taking of the levo and other meds or food and drink.
It's been really interesting learning about it all.
OK, so perhaps dump the B complex after all. Cyanocobalamin and folic acid are not the best forms of B vits.
For the vit D, I meant is it D3 or D2?
B12 is 2.5 what? mg? mcg? Same for the others.
OK, so if she's determined to go to the gym, so be it. She will probably find that she's knocked our for the next couple of days, though, because she won't have the levo of T3 necessary for sustaining that sort of exercise.
By the way her 50mg and 25mg are both different brands for some reason
That could be a problem - it is for some people. But, we won't know til she starts taking it properly. What are the brands? It would be a good idea to get both in the same brand, if you can. But, the trouble is, we don't yet know which brand suits her best.
You're welcome. But, you ain't seen nothing yet! lol
Hi I'm on 75mcg Levothyroxine my blood test always comes back as normal! Whatever that means some days I am feeling washed out dry skin brittle nails ect are part of the condition I take multi vitamins omega 3 seems to help with the hair and nails hope this helps!?
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