I was diagnosed last week with Hypothyroidism. A big shock, but I’ve been very unwell for a year. I’d really appreciate any help with interpreting my results and advice as to how I can get well as soon as possible! I’m merely functioning and desperately want to feel ‘normal’! I’m 43 and also discovered last week that I’m post menopausal too. I’m constantly exhausted, awful muscle pains, brain Fog and sore throats. I also have pernicious anaemia & have B12 injections every 3 months. My GP has prescribed 100g Levothyroxine which I started last week. When can I expect to start feeling any improvement? I still feel awful. My bloods are:
! Serum free T3 level - 2.7
Range: 3.10 - 6.80pmol/L
! Serum TSH level - 7.45
Range 0.27 - 4.20mu/L
! Serum free T4 level - 7
Range - 10.00 - 25.00pmol
Ferritin - (pc) - 138
Range 13.00 - 150.00ug
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Frolie
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Has your doctor told you to start on a 100mcg a day? If so you really should have started on 50mcg and then retested in 6 weeks and then increased by 25mcg. This is not a quick fix and usually you work your way up to 100mcg gradually.
I have never heard of anyone starting on a high dose like that but perhaps other members might advise you if they have. I am just speaking from my experience now.
Guidelines now advise starting patients on full replacement dose .....possibly in hope of avoiding the thousands we see on here left languishing on 60mcg or 75mcg for months/years
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.
It takes several weeks for levothyroxine to slowly improve thyroid levels and symptoms
Good to keep a diary of how you feel and symptoms
It can make it easier to see improvements when you look back week on week, month on month
Also always keep record of how feeling at each blood test, what dose your on and ALWAYS get actual results and ranges
Bloods should be retested 6-8 weeks after any dose or brand change in levothyroxine
As you have PA it’s highly likely your hypothyroidism is due to autoimmune thyroid disease (hashimoto’s)
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
Ask GP to test vitamin D and folate levels, plus thyroid antibodies
When was your last B12 injection?
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, best not mentioned to GP or phlebotomist)
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, 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. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Most GP’s haven’t heard of Hashimoto’s. They might know hypothyroidism is likely due to autoimmune disease...but as they have no specific treatment for the autoimmune aspect they ignore it
However, we as patients need to know, as there is often a lot we can do to help ourselves
Getting all four vitamins tested and supplementing to bring levels to optimal frequently improves symptoms
Your Ft4 and Ft3 were both very low ...so yes not surprised you feel terrible
You will need to be patient while levels slowly build up. Tempting to start rushing around the first day you start to feel slight improvements. Need to pace yourself carefully to start with
Well Teva is a Marmite brand....some hate....some love it
Obviously difficult to tell if you feel awful due to brand at this stage
If you have ever suspected you might be lactose intolerant it might suit you very well
Looking at my blood test results do you think they explain why I feel so ill ? Or are they not too bad?
They absolutely explain it, yes. They are terrible. Both your FT4 and FT3 are well under-range, when they probably should be near the top of the range. You are very hypo.
Thanks for your reply. I just hope the levels increase to normal levels soon. I feel so unwell and with two young children trying to homeschool them, it’s hard! Ive also put on weight which I’m finding very upsetting. I hardly eat anything and don’t snack.
Not eating much wont help (and that s another thing your Dr wont have a clue about). Make sure you re tested again in a couple of months, and you might need a dose increase at that point
Thank you for your reply. I’ll make sure I get tested in a couple of months. My GP told me 3 months, but I thought that sounded quite a long time? You’re right my GP just said, the weight will fall off once I get better. She didn’t discuss it with me at all!
Well, I'm not going to lie to you, but it's going to take a while for things to go back to 'normal'. You didn't go hypo over-night, so you're not going to recover over-night, either. With those levels I would imagine you've been hypo for some time. You've been started on a high dose for a starter dose, but it's very unlikely that that is going to be your optimal dose, it will have to be increased slowly: 25 mcg every six weeks.
Forget your weight for the moment, it's the least of your worries. Weight-gain is a hypo symptom, it has little to do with what you eat. And, if you have a poor appetite, you might have to force yourself to eat more in order to get well. Your body needs calories to be able to use the hormone you're giving it. Whatever you do, do not attempt a low-calorie diet. That will just make things worse.
Read as much as you can about your disease, it's important you know how it works. Reading the post and responses on here is a good way to start.
Thank you for your wise words. When the Dr gave me the prescription I thought, it’d be a quick fix. However now that I’m researching the disease I can see it’s far from that simple!
Interesting what you say about the weight issue. I guess once I start to feel more normal I’ll have more energy to be active and keep fit.
I’m going to find a private Endo so that I have the best chance to be prescribed the optimal treatments.
The fact that an endo is private doesn't guarantee that s/he knows anymore about thyroid that an NHS endo. Most of them are both NHS and private, but most of them are diabetes specialist who know next to nothing about thyroid. So, research your endo carefully before committing yourself. Don't just assume that they know what they're doing just because they're expensive!
Yes, I agree, most do NHS & private work. Normally I’d use NHS but I want to see someone quickly because I feel so desperate! I’ll do my research to find one who comes recommended and is experienced in treating thyroid effectively, rather than someone who’s just after a quick buck! I’ve had my fair share of useless private consultants in the past
Please try and control that feeling of desperation. There's nothing more any doctor can do for you at the moment, no matter how good s/he is. You cannot rush hormones. You've been given a hefty dose of T4 to begin with - much more than most doctors would give you - now you just have to be patient and wait for it to take effect. And it will take six to eight weeks for it to take full effect. And, even then it won't be enough. No doctor can change those facts of life. And, any one that tries is likely to make you worse, rather than better. There are no short cuts, I'm afraid.
Thanks, I’ll definitely check out the Thyroid UK site For recommendations . Agree, there are lots of charlatans out there! I just feel so desperate that I want to see someone quickly!
This is exactly what happened to me aged 40. I was embarking on IVF got tested for fertility and bloods came back post menopausal. Got tested for thyroid function FSH came back 7.85.
I was under medicated through GP, they put me on 100mcg Levothyroxine and bloods came in within their normal range even though TSH was still nearly 5. My fertility clinic wanted TSH to be 1 so I had to pay to see an Endocrinogist to get a private prescription to get my TSH lower.
All I can say is I'd been feeling AWFUL for years couldn't think straight or concentrate on anything it literally hurt my head to think. When TSH got to under 2 a light bulb went off and the fog lifted and my whole world became clear and sharp. It made me realise just how ill I'd been going around feeling and putting up with it. Now i have a different GP and she actually listens to me. You absolutely must get your TSH down to around 2 if you want to feel functional and energised. Its totally worth paying for a private endocrinologist to get your levels sorted then your GP will stick with what prescription was set by them. Also you MUST take it one hour before food in the morning and also selenium helps. If menopausal symptoms are bad Sage was the only herbal I found helped from Natures Best I'm through it all now after 7 years of menopause hell! If you decide to take some ferrus sulphate for iron deficiency you must take it at night hours after thyroxine. A gluten free diet helps with auto immune diseases. Good luck.
Thank you for your reply. Sorry to hear you’ve experienced early menopause too. You’re right I’m going to find a private endocrinologist because I can’t continue like this and desperately want to lead a full life. I feel like I’m merely existing at the moment and don’t have energy for anything.
Out of interest did you go on HRT? I’m currently deliberating whether to or not. I’m high risk for osteoporosis, which my mum has, but equally I’m nervous about taking HRT. Also confused as to which symptoms are Hypo and which are menopause!
Hi Frolie honestly try not to worry too much..i did a lot but when your thyroid is fixed you'll feel like a new woman. Menopause is an added complexity. Actually i just found out my cousin is a GP up in Manchester and is about to be lead GP in a brand new menopause clinic!! I haven't spoken to her for a while but theres not a thing on their website that doesn't go into great detail about all things menopause and also thyroid. If you're interested it's here
MyMenopauseDoctor.
I've done it cold turkey and I have to say at times it's easily been the worst thing that's happened to me and I've been through a very rough time with IVF!! I've a lot of cancer in the family so decided on that basis to avoid HRT. However my GP cousin shares the same family history and she advocates HRT to all for life so I'm thinking of getting in touch with her. My hair is so thin I'm worried I'll go bald soon! I'm naturally very thin and went to a nutritionist before all this to try and gain weight...now i have a spare tyre and cannot stop eating it's hideous! Sleeping or lack of is easily the worst thing of all i now can't sleep without Sominex.
My GP sent me for a bone density scan was fine but will be repeated regularly due to early menopause. You want to get some magnesium Natures Best Osteoguard, I'm very sorry to hear your Mum has Osteoporisis.
I had never once thought of the menopause then all of a sudden a blood test told me I was a long way post menopausal when trying for a baby that was a day I'll never forget. Hang in there stay fit avoid gluten see your endo get tsh low and takes lots supplements. Just started marine collagen shots hair better already.
Thanks for your kind message. It must have been such a shock to find out about the menopause in the way you did. I’ve been post menopause for a year according to my bloods , so I would’ve been 41. My GP didn’t bother to tell me!! I only discovered by accident as I was pushing for blood tests the other week, as I felt so unwell.
I’ll check out the menopause Dr website, thank you.
I’ve found an Endo who’s an expert in Menopause and Thyroid, I’m seeing her on Zoom next week, so I’m hoping I’ll have some more answers then. I feel really unwell on Levothyroxine, been taking it 9 days so far and it’s making me feel worse.
Hello Frolie, I just thought i would add a couple of points.
1, I totally understand your desire to hurry up and make it better....... but the body is complex in its re-balancing attempts for hormones, and it can take a good 8+ weeks to stop 'balancing' itself when you change what it's getting. Also the TSH (thyroid stimulating hormone) lags behind what your blood levels of T4 and T3 are. This is why its no use retesting TSH before 6 weeks( minimum)after a dose change.
So you cannot hurry finding the right dose, no matter who you see. You CAN prevent it taking longer than it should, if you manage to avoid seeing someone who doesn't know enough . But as you will read on here, that's not easy, as a lot of Endocrinologists, NHS and private, seem to know less than patients here, who have learned more from their own research.
2. You should bear in mind that taking Estrogen may increase the amount of thyroxine you use, because of something to do with the hormone receptors (the reason is a bit complicated -i'll look it up if you want it), and so maybe it might be worth getting thyroid hormone levels good , before adding HRT into the mix. Then you can see what's doing what.
If you decide to start both now you should be aware that changing/stopping HRT could effect your thyroid hormone need in future.
There was a post recently about someone whose TSH shot up (showing they had became undermedicated with thyroxine) after starting HRT.
Greygoose is right, it has taken you a long time to feel this unwell, and it will take your body a long time to re-balance and then rebuild .
But i expect you will feel a big difference in the next few weeks. Especially as you have started on 100mcg. But don't be upset if you feel up , down , and round the houses for a couple of months.
This addition is a big change for your body, imagine you just put petrol in a car that's been stood on the drive empty for a year.....the engine would run, but you would expect some stutters and creaks for the first few miles.
From memory..... I felt about 75% better within a month, when i started on 50, then a bit less good the next month , up to 100 .... better again then a bit less good..... ended up on somewhere between 125/150.
It will really help for the future if you keep your full history of Blood test results (with laboratory ranges each time) and make a note of how you feel, what dose taking, how many hours after last dose the blood was taken. Keep these the same for each test then you can compare properly.
Hope you start to feel more like 'you' soon
Best wishes
Tat
p.s i found it helpful to remember TSH(the signal) and FT4/FT3 (the hormones) as being on opposite ends of a see-saw........ TSH goes up in response to the hormones going down, TSH goes down in response to hormones going up.
Thank you for your reply. I feel AWFUL on the Levothyroxine; it’s making me feel much worse. Is this normal? I’ve been on it for 9 days. Should I stick it out or is it a sign I can’t tolerate it? I’m on 100mcg which is a big dose. I’m barely functioning and feel extremely unwell. Should I push through?
Very interesting to hear about Oestrogen. My Gynae has recommended oestrogen and and progesterone for HRT. I’m going to hold off until I’ve done more research. I’m seeing an Endo next week who’s an expert in Menopause and Thyroid so will see what she advises. Part of me thinks it’d be better to get my thyroid under control first, before embarking on HRT.
So Yes feeling worse for a week or three, makes sense, and is not unusual .
I started on 50 for 6 weeks then went to 100 .
To be honest ,cos it was 17 yrs ago, i cant remember how much worse i felt, but i remember i felt much better than before Levo, within a month of starting.
This new policy of starting on 100 straight away ....... it's mostly to save money and time for GP's, but does also mean you get to the right dose quicker.
However i can imagine your body may well be saying 'WTF?' right now.
Remember all your cells have been in 'hibernate' mode for ages, and you have just added nearly full strength 'summer sun'
It's not dangerous , but it might be a bit harder on you than it was for me, but then maybe you will ultimately feel better sooner.... don't know the answer cos i didn't do it that way.....
but my advice would be Carry on with 100 , re-test bloods in 6 weeks,(early a.m. blood draw, dont take that morning's Levo till after test. )
The only word of caution i should add is, if your 'feeling awful' shows up as a constant fast heart rate,constant sweating, or a 'fine tremor'. (ie hold arm's out in front, palms down, fingers straight,look for a fine tremor in fingers.)and these don't calm down after a few days, you could chat to GP or come back here and ask.
These are usual signs of a bit too much medication,which doesn't mean you cant tolerate the Levo , it just means take a bit less for the time being. But dont change dose without checking with GP or on here, The body likes consistency,and wont thank you for fiddling about every few days.
This is the link to the paper i was on about showing how taking HRT effects the dose of thyroxine you are needing.
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Help for a newly \"diagnosed\"
Newly diagnosed - Hashimoto's question
CONFUSED. NEWLY DIAGNOSED UNDERACTIVE THYROID
