Hello, welcome to the forum. You'll find lots of good information here. I started Levothyroxine in 2005 and continued once optimal dose achieved until 2018 with hair loss, and a few other symptoms. Not so straightforward now but getting older I guess and other issues to deal with. They will gradually increase your Levo and test until you reach an optimal level and you should then have a blood test every year to check levels (TSH, T4 and T3). Also important to check B12, Folate, Vit. D and Ferritin. It's also useful to get a copy of your blood tests once you've reached the optimal level - receptionist should make this available if asked. All the best.
Please don't take kelp - this contains far too much iodine and will make your hypothyroidism MUCH MUCH worse [back in the day, iodine was used to treat over-active thyroid problems] Multi-vitamins aren't recommended on this forum - they tend to contain too much cheap rubbish and not enough of what you need ...
With proper medication, yes you should be able to get back to all the things you used to enjoy, but you may need to be patient - it can take a while to get to the right level of medication.
Take you levo on an empty stomach, at least an hour before or two hours after other food/drink. It doesn't matter if you take it first thing, last thing or split the dose, but going forwards always try and have an early morning blood test (when TSH is highest) and leave 24 hours from your previous dose of levo (and a week from any supplements containing biotin as this can distort the tests).
Try and get full testing - even if you have to go privately - just testing TSH once you have a diagnosis isn't anywhere near enough. You really need: TSH ( a message from the pituitary to the thyroid which goes high if the thyroid is struggling), free T4 (the inactive thryoid hormone); free T3 (the active thyroid hormone T4 converts into and which is needed in every cell in your body); thyroid antibodies (high antibodies indicate Hashis, the biggest single cause of an under-active thyroid) and key nutrients - ferritin, folate, vit D and B12. Your levo will work best when these are good. I have had some success with the GP by saying that these are the tests recommended by Thyroid UK -but you will see LOTS of posts here about private testing.
You are on a low "starter" dose of levo, so get your bloods re-tested in 6 - 8 weeks, to see what increase is needed. Overall you are looking for TSH to be less than 2, prob less than 1 and free T4 and free T3 to be in the top third or higher of their respective lab ranges.
If you post your next blood results [with lab ranges in brackets afterwards - these vary from lab to lab so we need to know your ranges] the lovely people on here will hep you understand them. Good luck
Dolomite786, Those of us that have to resort to private testing use postal test kits from any of the labs listed on the TUK website here thyroiduk.org/getting-a-dia...
By the way, who the heck told you to try and control your high TSH (hypothyroidism) with vitamins?
I would disregard what the doctor said. If we are diagnosed with hypothyroidism, due to it being serious if untreated, we no longer pay for 'other prescription medications' due to being hypothyroid.
If having a blood test for your thyroid hormones this is the way to get the best results. The aim being a TSH of 1 or lower with FT4 and FT3 (free) being in the upper part of the ranges.
Always book the very earliest appointment (even if you do so weeks ahead) fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
Ask also for B12, Vit D, iron, ferritin and folate to be checked. Always get a print-out of your results, with the ranges. Ranges are important as labs differ in order for members to respond to questions.
I'm 40 and have had hypothyroidism for many years. I was started off at 50mcg of levothyroxine, then 75mcg, then settled on 88mcg, with a 6 week wait in between doses. Important to test after 6 weeks between doses. There's more than one brand so I'd suggest if one doesn't work for you then try another. For example, one brand gave me nausea but another did not. The amount you need can change with significant weight loss or gain. The point of Levothyroxine is to make you feel normal and functional. If you've been going through dose increases and you still feel tired and you're having symptoms then you may need to explore adding liothyronine to your Levothyoxine but try the Levothyroxine first to see how well you do on it. Keep an eye on your T4 and T3 levels and always ask for a copy of labs or get them online so that you can compare your progress. The T3 levels being very important because this is the active hormone that your body needs to feel well and strong. If you want to exercise then you need to have those T3 levels in an optimal range. For example, I need mine to be towards the top of the reference range but it's different for everyone. It may take months for you to feel the overall results of going on Levothyroxine because it has to build up in your body so it's really important that you take it every day away from food and do not skip any days. It's a storage hormone so missing even one day a week will make a difference.
For full Thyroid evaluation you need 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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
Ask GP to test vitamin levels
Always test BEFORE starting any vitamin supplements
Multivitamins are never recommended on here, too little of what we need
Kelp and iodine not recommended for anyone with Hashimoto’s as can make it worse
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Bloods should be retested 6-8 weeks after each dose increase (or brand change) in levothyroxine
Many people find different brands of levothyroxine are not interchangeable
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
The vast majority of hypothyroidism in uk is Autoimmune Hypothyroidism, where the immune system slowly attacks and destroys bits of the thyroid gland , leaving it able to produce less and less thyroid hormones T4 (inactive , storage , transport, version) and T3 (active). Levothyroxine (LT4) replaces this, and is converted to T3 in the cells.
Usually an antibody test is run to confirm diagnosis of autoimmune hypothyroidism (often called hashimoto's disease, but not all autoimmune hypo is hashi's, technically that's just if you have a goitre)
The antibodies tested are TPOab (Thyroid Peroxidase antibodies), or sometimes TGab (Thyroglobulin antibodies). The presence of high amounts of these show that the thyroid has been attacked.
You may find a result for these with your other NHS Thyroid Function blood tests, (or they may not have bothered )
50 mcg will probably not be the dose you end up on, but they put it up gradually and test in between. Don't be surprised if you feel nothing different for several days and then quite a lot better for 2/3 weeks, and then feel less good again. this is quite normal while adjusting up through the doses to get to the right amount for your needs.
The TSH test (Thyroid Stimulating Hormone) is unrepresentative until you've been on the same dose for at least 6 weeks, hence all the waiting around on first dose until a repeat blood test.
TSH is not what your cells use , it's a signal from the pituitary gland to the thyroid gland, to ask for more hormone to be produced. A slightly high number means " make some more please", (your 15 meant " hurry up and make loads more"), a low TSH means "were satisfied thanks", and 0 tsh means "we have too much already"
Doctors often use only TSH to decide if you need more or less hormone, but they should also look at the actual hormone levels fT4 and fT3(free T4 and T3) , because TSH does not tell them everything, and can sometimes give the wrong picture.
Once you taking extra hormone, your pituitary senses this and lowers the TSH, but since less TSH has the effect of asking your thyroid to slow down production, you actually end up with slightly less over all, and then your dose is increased etc etc, until you are taking what you need. At which point your TSH will hopefully stay stable at somewhere near 1 which is where most people's is before they become hypothyroid.
That's the nice tidy 'theory' version...... in the real world we're all different , we've all got numbers all over the place, and it's not about numbers it's about where you feel well .
Plus , just to make things a bit more messy, the thyroid is being destroyed over time too. and probably not in a nice gradual even way, but in fit's and starts, occasionally spilling out too much hormone all in one go as a bit more of it is killed off, and then being left with less thyroid tissue to produce hormone from.
Do remember though.... the majority of hypothyroid patients (apparently) feel fine on Levothyroxine , and get on with life as normal..... there's a few who have real problems and don't feel right on it, and those are the ones you find on here. So i'm hoping that since you didn't sound like you were having too many problems even though your TSH was already higher than many of us on here, you'll be one of those who once you're on the right dose , feel better, and forget about it .
Welcome, I'm a male too. Lots of great advice above. Don't get hung up on the weight loss, it shouldn't come off on its own, if you can return you thyroid levels to normal "for you" then with exercise and correct diet you will loose weight. Your issue is likely to be getting prescribed the correct amount of levothyroxine to achieve this. Most GP's will get your levels in range and tell you that you're fine. Yet you may still be symptomatic.
Post your blood results in 6-8 weeks and report your doctors ongoing treatment plan.
Can't help with the weight question , cos i'm one of the oddballs who didn't put much on, just got a puffy face, slow reflexes and had to drag myself around while feeling like lead.
Speaking of engine 's , the reason we all moan about Doc's just testing TSH is because it's a bit like looking at the temperature gauge , when you're trying to adjust the carbouretter ...dumb!
It's quite common for t4 to still be within the lab range , mine was too. But a word of warning about 'fine', 'normal' , 'in range'..... they are opinions , not results. And the 'range' is huge .. similar to if i drew a range for men's normal shoe sizes it would go from 5 to 11 , but individuals set points for thyroid hormones don't normally change much through life unless you're ill, in the same way that your shoe size doesn't change much .
So if you're a size 9 , but the doctor never measured it before, and you go in with sore feet and he measures size 6 now, he might say that's 'normal' ...... so you see the problem....
T4 is the inactive hormone and should convert to T3 and it is T3 that's the active hormone needed in our millions of T3 receptor cells. Brain and heart containing the most.
I was approaching 40 with 2 young kids (2 and 4), and havent slept properly for the past few years as you can Imagine. I had put on lots of weight suddenly, and I chalked it up to simply growing old and being run down. I’m also a carer for my father who is bed bound, as well as having a full time job stressful job
Mentally I had targetted turning 40 to sorting myself out and losing the weight, which I did with a very low calorie diet, lost almost 4 stones, and I thought let me have full bloods done... and thats where the high tsh flagged up! In retrospect did kind of make sense...
I have to assume the doc you see did not check you for thyroid autoimmunity (Hashimoto's). Hashi's is the most common cause of hypothyroidism. It is important that you try to figure out what is causing autoimmunity, if you have it, because just treating with thyroid hormones might not make you feel well if the autoimmunity continues without resolution.
Ask the doc to test your for TPO and TG antibodies. Although this is important, lots of docs don't do it. Most allopathic docs are unaware that Hashi's is often accompanied by/triggered by digestive enteropathy. If you do have digestive issues, it's likely that you have nutritional deficiencies.
If you start taking thyroid hormones, insist that the doc not use TSH to treat you, it is best to use FT3 and FT4 tests, and get both at least midway in their ranges. If treatment with levothyroxine (T4) only won't lift your FT3 to at least mid-range, insist that the doc add in liothyronine (T3).
Yes, the first doc said dont worry about it, test again in 3 months see if your tsh is high still.
I wasnt happy with that called back the next day, spoke to a doctor who was much better explained things more and he put me on the levo and also said to get the antibody test in 2 weeks time.
I think ill go see a private endo after i get all the print outs and data from the surgery. And have any outstanding bloods like youve all mentioned above.
his happened to me, I wrote a letter to surgery and got to see more informed doctor who put me on levo.
Don't assume going private or seeing endo is magic solution unless you get one highly recommended with thyroid. You can cover a lot of ground with this forum alone before paying expensive fees. Private blood testing good though.
good luck with your journey, I was early 40s when diagnosed. I'll give you some very general advice.
- become an avid reader - it took me about 9 months to digest all the great information on thyroid / hashimotos. 18 months in I am still learning mainly as I forget stuff or only realise its relevance to me as symptoms and my management plan evolves.
- consolidate and distil the information before starting any major life changing habits. and do not kick off too many in one go and you will not know which ones has a major impact (there are some obvious ones to do right away, this will become clearer). thyroid disease symptoms are very diverse as are humans, try to have a more holistic understanding before acting on impulse.
- keep a health diary, symptoms will come and go, new symptoms will emerge. After all you will be on hormonal replacement and this is variable factor along with seasons, general well being. Manging thyroid is a multi month feedback loop, can be confusing and frustrating getting to optimal point - if such a thing exists for long.
- be wary of medical advice and short comings of NHS. Thyroid not well understood and lots of GPs/ endo offer poor advice. Work around this don't fight it. Also partners and family might struggle to understand the diverse range symptoms and remedies and may think you are going a bit over the top blaming everything on your thyroid. Don't fight this either.
One other thought I want to offer you. If you use the wrong doctors, properly treating your thyroid problem might never happen. In other words, the rest of your life could be wasted on feeling terrible and unmotivated. I never fail to be amazed by the number of doctors (this reflects my experience) who really don't know what to do with patients who do not respond to cookie-cutter thyroid treatment ("Thyroid is easy to treat, all you have to do is give them levo and sample their TSH"). I hope cookie-cutter treatment works for you, but if not, be prepared to fire docs along the way until you find a good one.
Supposedly, iodized salt cured that problem, but then along came all the warnings to not use very much salt to prevent heart attacks. Rather like the advice to cover up and/or use sun block, which does help prevent skin cancer, but leads to wide-spread Vitamin D deficiency.
As was said, the majority of hypothyroidism is auto-immune, but I have never tested positive for the antibodies linked to Hashis. But my mother was hypo, as was her twin sister.
And as for salt, my sodium levels tend to be on the very low side. When I was in the hospital, they took away my water pitcher. Talk about making a patient miserable. My mouth was so dry I couldn't drum up enough saliva to swallow my dinner. Then they ended up giving me a liquid meal. Go figure. Doctors often make no sense.
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