After a full days work, I can’t function for around 3 days. I’m on the right level of meds and I take my vitamins. This is destroying my life.
I’m a wedding photographer so my work is full on but I never have felt so drained.
I slept for a full 10 hours and then had a 3 hour nap and I still feel like I have been hit by a bus.
Will my life always be like this?
Hi CharlyMae,
I unfortunately am in a similar position. Hearing it “takes time” to feel better, or “hang in there,” can get pretty old as you watch your life go by... Truly hoping you find what works for you, and just wanted you to know that you’re not alone.
Best and take care,
Natalie
I’m sorry to hear you’re struggling. Are you sure you’re on the right level of meds? I’m on Armour thyroid and finally found a doctor who wants to dose me on symptoms not blood tests. I feel better since he increased my dose a few months ago. More energy, fewer headaches, etc.
Are you in the UK? I took Armour for around 6 yrs, much of that via GP via NHS coffers... long strory but I did well on it, wish I'd been able to stay with instead of T3 alone.
Can you get it again?
I’m in the US. It’s worked well for me. I tried adding T3 to AT on a lower dose and that didn’t work. My TSH has never been higher than 2.7 (unmedicated) and I didn’t get a read of anything else prior to being medicated. My iodine has also tested low and vitamin D is also low in range (working on that).
I’m now on 3 grains a day. For close to a year I was on 1 grain to 2 at most (bouncing around trying different times of day etc) and I had some improvements but still lingering issues. Now at 3, I feel normal again. I haven’t lost the weight I gained yet, but I feel like it could be possible now.
So pleased that it's working for you - yes, 3 grains would surely have helped me when I needed more. I got up to 2 grains a day but - labs wouldn't test T3 + at a time when I still accepted 'ranges' as being more important than how I felt - so had to add T3.
Armour likely not available here now - I was even UN_diagnosed after GP accepting my dx, prescribing Armour for me for 5+ yrs... all because an endo 'didn't agree with the CLINICAL dx', preferring #s! I've bough AT in the US - relatives live there - but just ended up on T3 alone [another doctor said, "You'll need that for life"]. BUT it's always great to hear such news on good old Armour - yes, I'm sure weight loss will come. xox
There is a great book .. goodreads.com/book/show/716...
Check the details of your vitamins. So many multiple vitamins have significant amounts of iodine which can mess with your thyroid. Also consider large amounts of raw cruciferous vegetables like broccoli cauliflower cabbage. These can suppress the thyroid and should be taken in extreme moderation. There’s so much else but check those first.
Shouldn't be taking a multi-vit at all. One should test nutrients and just take what is needed.
Not true about the veggies, that's an old 'myth' that was debunked ages ago. 
Iodine doesn't mess with your thyroid. Iodine is crucial in production of thyroid hormones (they're made from it), so if your thyroid still is partly functioning, it needs iodine. And besides that, if you supplement with (the much needed) selenium, you need iodine as well. There's something about it in the last part of this article: deannaminich.com/the-health...
BirgitteG "Iodine doesn't mess with your thyroid".... perhaps 'mess with it' is not the right term , but it has a big effect, and can that effect can be in either direction . Levo thyroxine is basically Iodine, that's how it works. T4 is 4 Iodine atoms .. T3 is 3 iodine atoms , ie. T4 with one iodine atom removed by the deiodinases(so it can fit into the cell receptors.) De iodinase means what it sounds like it means ...."to take away some Iodine"
To quote directly from the link you gave:
"Iodine: What You Need to Know ;
...Excess levels of iodine might cause symptoms similar to that of deficiency, including a goiter and hypothyroidism. In some individuals, it can also cause hyperthyroidism...."
most people on Levo thyroxine will already be getting enough Iodine from the Levo. So if considering taking more they should surely have their iodine Level checked first.
And only do it under advice from someone experienced and knowledgeable about thyroid treatment /Iodine effects.
I know about iodine and thyroid hormones.
If you take levothyroxine to make up for an only partly functioning thyroid, you still need iodine for the functioning part being able to make hormones. And iodine is needed in other parts of the body as well. But yes, it can be detrimental if not taken with the necessary cofactors - selenium is crucial.
There are loads of research to find on the subject, and all of the research I've read where the conclusion was that iodine could had a negative affect didn't take the selenium levels in consideration.
I've been taking 12.5 mg for five years now - and after the cleansing (which wasn't very nice) I started feeling better, I can eat cruciferous without problems, and I don't have problems with breast tenderness (which came back when I had a short break from iodine). Some people take 50 mg.
I would recommend that you always read thoroughly about a supplement or seek advice. Doctors don't know much about them.
Reading Lynne Farrow: "The iodine crisis: What you don't know about iodine can wreck your life" is a good place to start.
What is very often not taken into account is this:
Previous iodine status of a population seems to influence the functional thyroid response to increased iodine intake and possibly the development of thyroid autoimmunity.
ncbi.nlm.nih.gov/pmc/articl...
Any recommendations which ignore the individual's previous iodine status, possibly over their entire life, needs to be taken with a pinch of salt. Iodised or otherwise depending...
How much levothyroxine are you currently taking
How long been on this dose
Do you always get same brand of levothyroxine at each prescription
Bloods should be retested 6-8 weeks after each dose increase
As you have endometriosis you presumably have Hashimoto’s
Essential to test vitamin D, folate, ferritin and B12 regularly
What vitamin supplements are you currently taking
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 levels and thyroid antibodies if not been tested yet
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Unless extremely petite likely to need to be on at least 100mcg levothyroxine per day. Dose is increased slowly upwards in 25mcg steps
Could you advise how to get a GP vitamin levels as mine always says during Covid these aren’t being tested.
Can you test privately?
Many people are forced to do so, even in normal times
When were vitamin levels last tested
Vitamin D tested once every 2 years on NHS....if you are at risk of vitamin D deficiency
Vit D as far as aware not been tested since I was pregnant (daughter now 12)
I tried testing privately but my fingers won’t bleed. Unable to afford now a blood draw test as money situation is tight.
Half term next week so I aim to see GP face to face.
Easy kit from NHS
Only requires 4 single drops of blood
I’m on the right level of meds and I take my vitamins.
It takes many months for body to adjust
Bloods should be retested regularly through first year or two when starting on levothyroxine
dose levothyroxine will be increased slowly upwards in 25mcg steps
When were vitamin levels last tested
Please add most recent results and exactly what vitamin supplements you are taking
Hi do you eat plenty food ? And drink plenty water?..I was like that then I had my cortisol checked and it was low so I was diagnosed with adrenal insufficiency..steroids help.
Three months ago SlowDragon and greygoose gave you excellent advice, did you act on it?
Do you have lab results that you can post?
Are you gluten free? You say you have Hashi's
Might other meds be affecting gut to serum action?
Have you increased to 50 mcg levo? After 3 months you most likely needed a further increase.....and more.
Who said that you are currently on the correct dose? Don't they understand that you are still symptomatic!
What was tested? TSH only or perhaps TSH and FT4....neither gives the information for full thyroid evaluation. See SlowDragons' response.
The important result is FT3 which is no longer routinely tested. Without it, we cannot see if you are adequately converting the storage hormone T4 to the active hormone T3 which is required by every cell in the body in a constant and adequate supply
It sounds as if you have been told that your results are " normal" which only means they sit within the ref. range....not that you are optimally dosed. If that were the case you would not feel as you do.
Has your GP ever actually asked how you feel or are you being dosed by numbers on a computer screen unfortunately modern medics are not taught to diagnose thyroid disease by clinical evaluation...just numbers. They overlook the fact that we are all different with different dosing needs. Thyroid diagnosis and treatment is often totally inadequate right now that is why well over 100,000 patients have arrived here looking for help
Thyroid tiredness is like no other tiredness...been there! It drains you and can only be treated by optimal dosing ie the amount of replacement hormone that makes you feel better.
Without seeing your labs it's difficult for members to be more specific. You are legally entitled to request those from your surgery.
Don't expect a quick fix, it takes time unlike taking a paracetamol for a headache!
SlowDragon has given you the information you need to begin your thyroid journey.
This will also help
thyroiduk.org/if-you-are-hy...
Come back with labs and feel free to ask as many questions as you need to...that worked for me!!.
Good luck
DD
Hey!
I haven’t eaten gluten or dairy in 8 years so that’s already cut out.
I had my meds increased to 50mg and I have my next blood test in 2 weeks.
I had the hashimoto antibodies blood test 5 weeks ago and still awaiting for the results 😳 so I don’t know if I have hashimotos yet?
I take vitamin D & B12 but not every single day as I just pee the B12 out most of the time.
I will post my latest lab results in 2 weeks that includes all of the above.
Thanks
OK...good start.Your next labs will hopefully point to the way forward ...wait and see time now!
What were the results of your B12 and VitD prior to supplementing.
How much VitD are you taking ? Also B12 ?
Fatigue closely linked to low Ferritin so worth having a full iron Profile done if low.
Not heard of antibody tests taking so long 😥
My B12 and Vitamin D was quite low!
So how much VitD are you taking ? B12 ? Which brands ?
These
H & B are cheap for a reason and never recommended on here
Vitamin D 25ug is only 1000iu
Vitamin D at 45nmol means as a minimum you need 1600iu daily for minimum of 6 months
But with Hashimoto’s likely to need higher dose
GP should prescribe 1600iu everyday for 6 months
See
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
2 good videos on magnesium
healthunlocked.com/thyroidu...
Vitamin D and Covid
Notice how much vitamin D many of these medics are taking
Low B12 symptoms b12deficiency.info/signs-an...
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Recommended B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
When supplementing B12 recommended to also supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
Extremely IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
CharlyMae
I take vitamin D & B12 but not every single day as I just pee the B12 out most of the time.
How do you know you're peeing out the B12? The body takes what it needs and any excess is excreted.
Are you taking a B Complex as well as the separate B12?
Unfortunately you have chosen a very poor quality brand of supplements.
The B12 doesn't say sublingual. I think the one you have is a normal tablet that you swallow which is absorbed in a totally different way to a sublingual lozenge.
Also, that supplement contains cyanocobalamin and the recommended form of B12 is the bioavailable form methylcobalamin.
H&B own brand supplements are cheap for a reason - they use the cheapest and least absorbable forms of active ingredients. They're only popular because their constant advertising and "sales" suck people in.
In response to your previous post 3 months ago
healthunlocked.com/thyroidu...
concerning your nutrient levels I replied with this:
With your level of B12 it would be recommended to take 1000mcg sublingual B12. If you took the Igennus Super B at the recommended dose of 2 tablets you'd get so close to this you'd probably not need to take a separate B12. It might be worth trying that first and retest in about 3-4 months to see how your levels have improved.
If you take a separate B12 we also have to take a B Complex to balance all the B vitamins and I suggested two good brands:
Often recommended here are Thorne Basic B or Igennus Super B.
I now add a caveat, Igennus Super B contains Vit C and this keeps the body from absorbing B12, B12 needs to be taken 2 hours away from Vit C.
Your D3 is also in tablet form which is the least absorbable form of Vit D (and contains a lot of muck you don't need). Again I made a suggestion
For Vit D I like Doctor's Best D3 softgels which are a pure supplement with no excipients, just D3 and extra virgin olive oil to aid absorption.
For Vit K2-MK7 I like Vegavero or Vitabay.
Also, 25mcg D3 = 1,000iu. How much are you taking because I replied previously that with your current level of Vit D a dose of 5,000iu is suggested:
To reach the recommended level from your current level, you could supplement with 5,000iu D3 daily.
With results like that you obviously aren't on the right level of meds yet as TSH is way, way over range and FT4 is still under range. I think you do need B12 every day (sublingual methylcobalamin - I'd go for something like Jarrow Formulas 5000iu) as B12 has not reached 500 - below this there is every possibility of neurological damage which can be permanent.
50mcg is only the standard starter dose, so you are almost certainly in need of next dose increase in levothyroxine
Approx how much do you weigh in kilo
Guidelines on dose by weight is approx 1.6mcg Levo per kilo of your weight as an initial guide ...some need more, some need less
If lactose intolerant likely to need higher dose than typical
If on lactose free diet are you on lactose free levothyroxine?
Teva or Aristo are only lactose free levothyroxine tablets
Some patients do better on liquid levothyroxine
If gluten intolerant, likely eventually to need addition of T3 prescribed alongside levothyroxine. But first step is to get dose levothyroxine increased slowly upwards in 25mcg steps until on full replacement dose.
Obviously all four vitamins need to be optimal as well
Vitamin D at least around 80nmol and around 100nmol maybe better
B12 at least over 500
Folate and ferritin at least half way through range
If in say 6-12 months Ft3 remains low you will need T3 prescribed
To get T3 prescribed is difficult, but not impossible. Initial trial has to be prescribed via NHS endocrinologist.
Ask for both Free T3 and Free T4 to be tested as they give us more information than T3 and T4.
Anything with biotin in needs to be left off 7 days before bloods are done as there is biotin in the lab testing.
Just to clarify, that does NOT include everyday foods many of which have some biotin in them.
There doesn't seem to be any evidence that ordinary dietary consumption has any effect whatsoever.
Thanks helvella I should have said any vitamins.
It's so hard isn't it!!! I had my thyroid removed in 2004 and am still struggling!! Some days i have good energy, others not. I also need to remember to go to bed earlier especially when i'm up early the next day for work. My Endocrinologist wants me to reduce my levo despite my telling him i'm reasonably ok because of the effect of the meds often contributing to osteoporosis (which i already have). Most importantly i need to be able to function properly at work and i need to stress that to him. Yes, as others mentioned try and make sure your vits are good, my B12 was low - lots of things I had to find out the hard way am afraid. Do feel very drained/exhausted after work - also learning not to do too much after work as well.
Best Wishes to you.
Going by my own personal experience, anyone who doesn't have a thyroid gland at all should -at the very least be prescribed a T4/T3 combination or T3 alone if still not progressing. They have recently withdrawn the 'old fashioned thyroid hormone replacements i.e. NDTs, without any notice at all. NDTs - natural dessicated thyroid hormones saved lives since 1892 and restored health. It was made from animals' thyroid glands. If they can do that in 1892 why not today.
It is very unfortunate that the 'powers that (don't) be' do not seem to understand how much patients are suffering and they - the professionals - are insisting that we take what they prescribe - no matter if we still remain very unwell or even have new clinical symptoms. It is a pity they have removed NDT (natural dessicated thyroid hormones as well as T3).
I would say to Endo, I am willing to stop levothyroxine (T4) if you will give me a trial of T3 alone or a T3/T4 combination.
We have lost our 'old fashioned doctors' who diagnosed us without blood tests but with out clinical symptoms alone. Nowadays I doubt one professional knows any clinical symptoms at all.
I was far more unwell on levothyroxine and was in and out of hospital often and the cardiologist couldn't figure out why I had severe palps during the night (with recorders etc etc) and was thinking of putting an implant in my heart to 'see what was going on'. Fortunately I had some T3 prescribed to T4 and it was amazing the improvement it made and I went onto T3 only and all symptoms disappeared. I am not saying that would be everyone's experience - it is individuals response to certain doses or to the medications.
Are you still consuming vast quantities of soy?
No I cut that out as soon as I found out it was no good! I drink oat milk now
Good.
But who said you were taking the right amount of 'meds'? If it was your doctor, then I would suggest he cannot possibly know. Only you can know that. And, if you're not feeling right, then I very much doubt your dose is right.
It was my doctor! She’s very cautious
I would change the word 'cautious' with afraid as they seem to have strange notions about thyroid hormones which I do not understand. I suspect if our TSH goes low that their assumption is that we've become hyPERthyroid but that's not the case.
"People develop hypothyroidism when their thyroid produces low levels of hormones."
I don't think it's caution, I think it's lack of knowledge and understanding of how these things work.
You asked "Will my life always be like this?" and I'm afraid the answer is 'yes', if you stick with this doctor, it will because she doesn't know enough to make you well. You either need a new doctor, or you need to learn about your disease for yourself, and start taking charge of your own treatment. The latter would probably be more effective.
I was like you, could only work part time as I slept the rest of the day. I also took my shop bought vitamins for years and 125 thyroxine. It was always blamed on my thyroid problem and nothing else was looked for. 7 years ago I was diagnosed with hypersomnia and sleeping 18 hours a days and walking in a fog for the other 6. Determined not to take the drugs the hospital offered I turned to the internet. I had private blood tests and genetic tests done. My son also saw a programme on tv where a man was like me, he had very high levels of homocysteine in his body, something that the tv doctor had never heard of. It turned out I did have high homocysteine and was genetically programmed that way. To lower it I keep my b12 levels very high and have yearly private blood tests that include t3,t4, b12,vit D. And a few others. I keep all these vitamins at the very top of where they should be and even my conversion t4 to t3 has improved.prior to my research I did visit a endocrinologist privately who was puzzled why I was so tired and after him ordering tests that came back negative, he had referred me to the sleep clinic. he phoned me 1 year later and I told him what I was doing and he was very positive saying he had learned something. My regime is now high doses of vits, andTeva thyroxine and I am awake all day.
Poor thyroid function is one of the causes of raised homocysteine
You have probably already seen this
foodforthebrain.org/for-hea...
As is low B12 I have read 🌻
Gosh, yes!
Swallowing a few supps randomly now and then isn't going to do the job
Just noticed the OP's new reply including labs.
"I’m on the right level of meds"...little wonder so many patients are struggling.
I wonder when those tests were done ? Surely GP should have monitored more testing and TSH reduction .... SIGH !
About 4 years ago I asked to be referred to an endo.....waste of time. Only interested in levo treatment. Diabetes specialist!
But , when the follow up letter arrived at my surgery the GP I saw then said he was surprised to see a letter from an endo because he thought all thyroid matters were dealt with by GPs.
The words "head" and "brick wall" come to mind!
SIGH!!!
Charly Mae - I know it is easy to say 'don't worry' but if your livelihood is affected then you will have worries.
If you were on 'optimal' medication - in theory - all symptoms should resolve.
I note that your B12 was very low. Your doctor should test to make sure you do not have Pernicious Anaemia - another autoimmune condition - that would mean you would need B12 injections for life. I have hypo as well as P.A. and my mother also had P.A, too. I have a couple of other autoimmune conditions too.
If you've had a recent blood test - what was your TSH? The aim is a TSH of 1 or lower and both Free T4 and Free T3 should be in the upper part of the rangers. Doctors rarely test the 'frees' and it is important to have them done.
Results posted above - no date. TSH very high and FT4 below range. Still on 50mcg !
My TSH was 45 which was when I got diagnosed and is now 3.4 and I’m on 50mg.
TSH better around 1 so you need a dose increase of 25mcg. The FT4 and FT3 were ??
Your dose is a 'starting' dose. We then have a blood test every six weeks and GP should increase our dose until we feel much better. Usually we get a blood test every six weeks and if TSH is 'still high' we need small increases to bring TSH to 1 or lower and a Free T4 and Free T3 should be in the upper part of the ranges. The majority of doctors are poorly trained that they think if the TSH is 'somewhere' in the range that we're on a sufficient dose but we're not especially if we have clinical symptoms.
Ask your doctor for an increase in dose and tell him/her that you need your TSH to be around 1 or lower and a Free T4 and Free T3 to be in the upper part of the ranges. A 'free' T4 is different to a T4. Just to complicate things and both'Frees' are rarely tested.
It is a big learning curve and thankfully, we have this forum to help others along a rough road at the beginning. Thousands do fine on levothyroxine alone but they will not be searching the internet for help/advice.
When I was first diagnosed my TSH was 100 and that morning the GP phoned to tell me I had absolutely nothing wrong!!!! It was a good thing that I had requested a blood test form a couple of weeks before when I was away from home. I cried because I felt so unwell and had never heard of hypothyroid or hyperthyroidand never knew anyone who had hypothyroidism. (I doubt few doctors know exactly how a dysfunctional thyroid gland affects people).
I got another blood test - GP was phoned as the hospital lab had a query of why I was given another blood test an hour or two after the lasts results phoned to the surgery.
The surgery was none the wiser, whether I had a TSH of 10 or 100 it did not make a difference to whomsoever looked at the results.
It was the hospital who phoned the head GP to ask why I was given another blood test.
I had requested the blood test myself when away from home due to advice from a First Aider who had to take me to hospital and when I received their first call that I had nothing wrong, that's when I went to lab for my own t4.
This is the procedure for blood tests. Make the earliest possible blood draw - even make it weeks ahead. It is a fasting test and take thyroid hormones after blood draw - not before as that would skew results.
I now treat myself - the surgery will do an occasional blood test.
Some doctors don't know much but am very fortunate the new one in the surgery is humane and helpful.
I deal with him alone I feels as if he is a 'saint' compared to the others.
He also referred my husband to the A&E during lockdown who underwent an op two days after he was admitted. It was into a ward and he was worried as there was lots of coughing during the day/night.
Anyway, his op was successful and he is now back to good health. We'now both had virus jab and we are both well.
Don't worry too much as it is slow and steady and when our health improves it is a huge relief. As you read other members posts you will steadily learn about hypothyroidism.
This is an excerpt from the following link:-
If you're prescribed levothyroxine because you have an underactive thyroid, you're entitled to a medical exemption certificate. This means you do not have to pay for your prescriptions. See getting help with prescription costs for more information on this.
To still be on 50mcg levothyroxine is wrong. Your dose should have been increased every 6 weeks approx after a blood test. Some doctors know nothing at all about how best to treat Hypo patients except to look at a TSH result and they are happy when it's 'within range' and that doesn't mean 'optimal' when the aim is a TSH of 1 or lower with both 'frees' in the upper part of the ranges.
TSH means thyroid stimulating hormone. It is from the pituitary gland - not the thyroid gland. It tries to produce more thyroid hormones but it cannot when we, the patient, need more levothyroxine (or whatever options they take).
How do I get them to listen though? She put me on 50mg and said if I get a racing heart then I need to go back onto 25mg. Instead I’m still sluggish, tired and feel like death so surely the doctor has no idea! 😂
Suggest you get bloods retested as scheduled in 2 weeks
Make sure you get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Come back with new post once you get results
Assuming test shows TSH over 2 and/or Ft4 under 50% through range .....request 25mcg dose increase in levothyroxine
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Guidelines are just that ....guidelines. Some people need more some less
The doctor's response just goes to show how inept their training is as hypo is not an uncommon disease. Yes - you're right - the professionals have no knowlede about how best to treat hypothyroid patients and to enable relief of clinical symptoms.
When I was first prescribed levothyroxine I was forever in and out of the A&E with severe palpitations I had overnight heart recorders as cardiologist couldn't figure out what was happening. He was going to put an implant in my heart to 'see what was going on'. Just then T3 was added to a reduced T4 and all palpitations ceased. Eventually I stopped T4 altogether and have taken T3 (liothyronine) since and am well. I don't take a high dose and have adjusted due to how 'I feel'. I don't have to adjust dose often.
Doctor should take a blood test every six weeks and increase your dose slightly as you want your TSH to be around 1 or lower (many doctors seem to believe that we're on too high a dose and they get nervous). .
Sending you a hug, you need one 🤗If my TSH was that high I’d not be able to get out of bed let alone do a day’s work and even be able to focus on taking photos.
I hope you can get an increase in your meds as you need it. The admin’s posts above are excellent advice. Without them I would not be doing half the things I manage to do now.
Thank you everyone! Your advice is incredible. I feel like my doctor doesn’t understand and she has hashimotos herself which is ironic! 😂
I’m still waiting for my hashimoto test result to come back and they said it takes 6 weeks.
I’m currently on 50mg but I’m so sluggish still so can’t be right.
My initial TSH was 45 and now it is 3.4 and that’s why she put me on 50mg but said if I get a racing heart then to go back onto 25mg but I have none of that. I just sleep all day?
It’s effecting my entire life. I will buy better quality vitamins today online.
I cut out soy and I don’t eat gluten or dairy anyway as I’m intolerant.
Maybe I should ask for a different doctor and get a second opinion.
your support has helped me so much xx
Your doctor suffers from thyroid disease herself ... she must be a doozy!
She sounds afraid of thyroid hormones!Probably taught that they will cause heart problems and crumbling bones!
Palpitations can be caused by undermedication as well as overmedication.
Bear in mind that a dose that is too low can " tease" the system into signalling the body for more hormone ... sometimes with converse symptoms.
At 3.4 your TSH is still too high, should be 1 or less when medicated.
It's pretty clear that you need further levo increases not a misguided suggestion that you need to reduce to 25mcg again.
When you reach 6 weeks after last test, ask for a full thyroid test....the results will prove the point! If the GP understands them!
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
You can do this!!
I think you are quite right - in that doctors may be nervous if they prescribe a dose of thyroid hormones that they think may be too high. They may also believe they'll lose their licence, They are not confident at all about prescribing for a dysfunctional thyroid gland and get worried, if a patient's results are unusual unless they have hypyroidism themselves. I also think that due to them not being very well educated about Hypothyroidism or hyperthyroidism, they will be nervous when they have to prescribe. They fail to understand we need small increments in dose until our symptoms are relieved altogether. They should also ensure that our vitamins and minerals are optimal.
My GP was in a flap when a test returned a suppressed TSH and a high FT3....she didn't seem to understand that is what happens on T3 only. I said a test wasn't helpful. How do you work out the dose then?..."as they did before tests, good old fashioned clinical evaluation." Oh!I've since given her a written statement saying that I take full responsibility for my thyroid care.....it lets her off the hook should she ever be questioned by the hierarchy.
Hi, I’m just seeing what meds you’re on now. Levo only. Fwiw I tried Levo too and after a little bounce, I was also back to being exhausted. I remember it bc it was Xmas break and I could barely get through a day of not working even, was totally constipated all vacation. Ugh. So as others have said, your dose is likely not right if you feel bad. And for me, switching to Armour thyroid (t3 plus T4) is what did the trick. But it was almost entirely self driven and multiple doctors (from GP to Endo to functional medicine doctors) were mostly useless. I found an Endo recently who increased my dose of AT. First time anyone has really offered anything that helped me. I do think a second opinion would be helpful. Someone who cares more about symptoms.
Unfortunately, in the UK, they have removed all NDTs i.e. Armour thyroid, Naturethroid etc. They did so without any warning and despite the proven success of these for many people since 1892. Also doctors did not need blood test results in 1892 and people recovered from then on. Many patients were so upset to have them removed as they had recovered their health.
Awful. I’m happy that I can at least get a prescription here in the US. Although I just switched insurance companies and the new one won’t seem to cover AT. My last filling was over 150 dollars. Ridiculous
I would ask them why they have refused your prescription, after all you wouldn't have switched if they were going to remove what they used to provide.
Are you in the UK? Its a different insurance co. I had to switch bc of a job loss (my husbands) so I’m stuck. The US health care system is a wreck as I’m sure you know. Coverage is generally tied to employment, and it’s mind boggling confusing, inconsistent and expensive (depends on what your employer negotiates and contributes, so it can end up dramatically more expensive if you move jobs). But the care is often mediocre and many specialists don’t take insurance at all so one is forced to self pay and hope to get some money back. But at least my meds were mostly covered (still a co pay of 30 dollars in most cases), until now!
Off topic but I’m reading about people who have been stuck with thousands- even hundred of thousands of dollars- of Covid related medical bills here in the US. Our system is practically criminal. Can you imagine being in a health care crisis and then sitting around trying to wade through confusing insurance and hospital statements and then being threatened with collection bills? In my experience, hospitals are very quick to send bills to harassing collection agencies. They simply do not care.
How do I get them to listen though? ....You direct them to this article in GPOnline healthunlocked.com/thyroidu.... Endocrinology The Thyroid And The Heart. 15th April 2010GPOnline .com
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L ".
Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool.
SlowDragon also has another reference recommending GP's to aim for TSH [0.4 -2.4] i think...
You say you'd like to trail an increase in dose of 25mcg to see if getting your TSH closer to 1 will improve your remaining symptoms, as they are having a material effect on your daily functioning ... if they say " oh but these aren't hypothyroid symptoms... then the answer is "...hypothyroid symptoms are very individual...and until we have optimised my thyroid treatment as recommended above, we can't rule it out as the cause ... so i'd like to try an increase anyway."
if they are still saying "No no, no no no no...." at this point, i suggest you throw in the suggestion that if they are unwilling to use Levo to get your TSH down to nearer 1, then you'd like to be referred to an endocrinlogist to see if a trial of T3 added to your Levo (to improve you fT3 level ) would help you regain your full health.... when they say "We don't know your fT3 level is low..." you say , " how would you know that without testing it ... please will you test it"
They REALLY won't want you to get a trail of (extortionately) expensive T3 , because if you did , eventually they would end up paying for it ....
So they will hopefully realise giving you an increase Levo is the easier way to proceed.... they want you to 'go away and not put pressure on them' where thyroid treatment is concerned ... they are scared to death of 'overmedicating' people and being disciplined by the GMC... unfortunately for us the GMC don't discipline them for leaving people undermedicated.
It helps them get past this fear if you show you clearly understand about the risks of overtreatment, which they see as TSH going below range. or fT4 going over range.. (but your TSH is nowhere near 'under-range' yet so that is not an argument they can use on you at the moment. and i don't know if they've even bothered to do an fT4 test on you)
Let them know you know the signs of overtreatment ..... a slight tremor in the fingers , feeling too hot , a faster than usual heartbeat, over frequent bowel movements.. and of course you wouldn't want that and would know to reduce dose....
To get a better understanding of the 'risks' of low TSH go to this post healthunlocked.com/thyroidu... and follow the links in my reply to it... it's a bit of a trail of breadcrumbs ,sorry
*Edit .... please do NOT let them start discussing CFS/ME as a 'cause' until they have optimised your thyroid treatment first, including the ferritin , folate, B12 , and vit D
Sadly, 'they' often don't/won't listen... whatever they're directed to and however 'informed' the patient might be (certainly not saying 'pushing it' to them)... it can often make things worse. Their 'power-laden' authoritarianism isn't really good enough in this 21st C; sometimes they simply ignore any/everything for their own 'little pet theory'. It is worse still when a whole endocrinology dept is stamped through like Blackpool Rock with erroneous and harmful 'beliefs'...
Wholly accept what you're saying and said some of it myself for several years... much falls on cloth ears. I've had both tachy and brady - before ever taking any thyroid hormones (err, big clues ++ were there) AND when same taking Armour and Lio - I couldn't tolerate straight T4.
I certainly wouldn't be pushing CFS/ME - because there's even less in the way of solutions in that field [other than it's Mitochondria not Hypochondria from the wonderful Dr SM] - but it's worth considering CFS, which is a whole other ball game to that of hypothyroid fatigue. Many people simply don't get their thyroid treatment optimized, despite the wealth of research and the rich thyroid history out there, potentially making CFS something else to creep up on the already long neglected. 😪
☘️
When my doctor expressed fear that T3 would damage my heart or give me osteoporosis, I suggested "Let's check that out." I asked for and received a bone density test (my numbers were all positive, and at my age they are usually negative) and an echocardiogram , with results normal. Now after a year on T3, she had my bone density retested and although the numbers did go down a little (I credit them taking away my HRT for this!), they are all still positive. (I'm 75)
Have you or anyone medical considered CFS/ME? There can come a point where 'hypothyroid fatigue' becomes... as you describe = wiped out for days afterwards. So feel for you - I take supplements for CFS and they do seem to help, at times, but who can tell? Very best to you. xox
Research (below) which indicates that a cohort of CFS / ME patients are suffering from low T3.This certainly seemed to be true for me.
Poor conversion lowers T3. I have the Dio2 polymorphism/homozygous which, again, reducesconversion
frontiersin.org/articles/10...
Yes, it does seem to emerge for some people. I'd had 'lie down on the curb' hideous fatigue from end Sept 1979 which Dr S said must have been EBV from the college environment (which I'd had un_dx illness 6 months earlier) - the amount of times I've 'picked myself up... dusted' for decades, fatigue was kept at bay several times.
2006/7 hypothyroidism finally devasted the managing with fatigue. (I'd been 0.14 just within 'TSH range' in 2003 - never told of that, despite heart issues, unshiftable weight... something I'd never had. By 2007, only 0.11 within ranger, then despite heart diagnoses [cardio asking was there a thyroid problem - I had no clue] I was still not told about it. I've a gallery of pics which CLEARLY shows two 'hypothyroid creatures from the deep'... still not told, with a list of signs/symptoms. By Feb 2010, Dr S dx = finally on Armour - in May 2010 Dr P said, "You'll need T3 for life". Had some good spells.
Just when I thought I knew all there was to know about grotesque fatigue - having been told by a GP in 1980, "There's 168 hrs in a week, I know I work most of them, you're tired, TOUGH"... nothing much has changed, then came the bludgeoning variety. CFS/ME - I finally refused their dx - as bad as endos. Appalling - all of it - thank you for the link, much appreciated. Good that you discovered the Dio2 link and I hope you've found something that helps ease... xox
I've just sent a general reply about 'terrible tiredness' being possibly caused by growth hormone deficiency. I didn't notice your post about having heart problems and weight problems then. But now I feel almost sure you have growth hormone deficiency because these are classic symptoms, as well as the fatigue.
Look it up on pituitary.org.uk/informatio.... and yourhormones.info/endocrine...
I do hope you explore this angle because replacement growth hormone can solve the fatigue and low mood. Many GHD sufferers feel suicidal.
Write to me if you need help getting tested!
Thank you for your thoughtfulness - and yes, pretty sure to have had several hormone deficiences. I've had to cobble together my own health for so long (but see * below), with many supplements, some giving relief... yet who can tell!?
The heart problems, albeit family history, seem to me to have stemmed from low thyroid... weight being a common problem too: I had/have several hypothyroid signs/symptoms but always kind of saw there being 'something else' in the background. I've been able so far to keep the heart issues OK/good + to address the stubborn weight issues [which I never had prior to this!] and keeping T2D at bay.
*Aside from Dr S and Dr P, as with so many of us, no one has ever really wanted to know. Extreme fatigue began end Sept 1979, apparently EBV, where an OTC brochial dilator containing ephederine was needed to function, some reprieves where I could function. But then hypothyroid from 2003 [0.14 just withing 'range' - I'd now be on their new criteria!] yet not informed with weight + heart issues. By 2007, same heart + weight issues + several signs n symptoms [0.11 just within range], yet still not told. Aside from a GP March 2010 who agreed to refer me to Dr S and accepted his dx, then prescribed Levo + Armour T, which did help for several years (bizarre tale, I was un_dx after 5 - 6 yrs via charlatans, yet had been told need T3 for life by Dr P and still take this, along with adrenal supplementation). Apparently CFS from end 2014, certainly 2015 - helped again by supplementation - medicine has nothing on offer.
Yes, I think there's 'something else' and of course I'd appreciate any information from you on this.
Hi, well my advice is to push hard for a glucagon stimulation test, a test where you have to lie in a hospital bed and have your blood taken every half hour to see how you're responding to an initial injection of glucagon. Your body should be able to produce growth hormone and cortisol, and if it doesn't, it's a sign you're deficient. An alternative is the GHRH+arginine test, but that only shows growth hormone deficiency.There is amazing resistance among endocrinologists to give patients this test. They try to fob you off by measuring your IGF-1 levels and saying that normal levels exclude growth hormone deficiency, but they don't, as any fule kno (did you read 'Down with Skool'?). There are only two endos I know of who will treat you properly, Dr Tara Kearney at Salford Royal in Manchester, and Dr Simon Aylwin at Kings College Hospital London - actually probably a third, Dr Stephen Cleland in the Winchester area but it is several years since I heard about him.
If you want more information visit our website christopherlanetrust.org.uk through which you can contact me direct and put you in touch with others who have been down the same route. I do wish you the best of luck and a lot of perseverance. Do persevere!
Thank you for this info + link. As you say, getting anything done... I'm wondering if there's anything can be taken - with caution - to help address potential deficiencies?
Excellent link, thank you again! Fortunately there always have - hopefully always will be - excellent researchers out there... doing their very best, only for patients to be faced with... 👽
I did not see your current medicatio. I used to get that extreme fatigue on levothyroxine. I would try Synthroid or Levoxyl. Make sure your thyroid levels really are optimal. Your B12 should be closer to 800 to be optimal and your D around 125. Make sure to take magnesium (such as glycinate) and K2 with the D3. How are your ferritin/iron levels? You can also do a 4 part cortisol saliva test to test adrenals.
I did not see your current medicatio. I used to get that extreme fatigue on levothyroxine. I would try Synthroid or Levoxyl. Make sure your thyroid levels really are optimal. Your B12 should be closer to 800 to be optimal and your D around 125. Make sure to take magnesium (such as glycinate) and K2 with the D3. How are your ferritin/iron levels? You can also do a 4 part cortisol saliva test to test adrenals.
How is your Iron? B12? Might u be having an EBV flare up? Drinking tons of water? Getting restful sleep, clean food, exercise (the little that u can do? ) Do u have Lyme? Just some thoughts, feel better soon! God bless!
My B12 and Vitamin D was low in my latest blood results and I’m supplementing. I drink 2-3 litres a day, eat a reasonably clean diet.
I don’t eat gluten, dairy or soy.
Have you looked at FT3 to make sure you are at least mid-range? Are other hormones like cortisol, DHEA, estrogen, progesterone in upper half of normal range? Are your nutritionals, e.g. ferritin and blood protein also in normal range? Are you supplementing trace minerals? Do you know if your digestion is functioning well? (Not rare for thyroid problems to be precipitated by a damaged gut, which in turn can precipitate Hashi's.)
I’m having a full hormone panel done in July. My gut is bad... always has been. Very slow and sluggish, painful.
I also have endometriosis and PCOS.
Did any doctor check whether you have TPO and/or TG antibodies characteristic of Hashi's?
Endometriosis and PCOS both strongly linked to Hashimoto’s
Links re endometriosis
healthline.com/health/women...
preventmiscarriage.com/endo...
PCOS
Over the last few years I've found out a few things levothyroxine does to our bodies. The high levels of t4 we get for a few hours every day make the kidneys excrete some nutrients and electrolytes that we apparently need higher levels of to function properly.
One of them is potassium. The excretion of potassium is the high risk in hyperthyroidism, and of course we don't lose as much, but we can apparently lose enough to make a difference in our wellbeing, even when the level is in range. This can (among other symptoms) give some of the symptoms often described as symptoms of hypothyroidism - weak muscles, which in turn cause muscle and joint pain and constipation; muscle cramps; palpitations; head aches; bloating; depression/anxiety; fatigue are some of them. Potassium needs magnesium to work properly, and has to be balanced with sodium. Taking potassium supplements can cause the phosphorus level to be too low, which in turn can cause muscle weakness and fatigue as well (It's needed for energy production in cells), so there're no easy solutions - but eating a healthy and varied diet goes a long way, especially if you take enzymes to help you absorb the nutrients. And have blood tests to see if you're in the lower part of reference levels and can do with a raise.
(I haven't got the time right now to find some links for this, sorry ...)
Another thing I stumpled over recently, searching for something that could eliviate long covid symptoms, is that levothyroxine can cause low level of a nutrient that's crucial for energy. It's explained here why it is:
When people talk about terrible tiredness on this forum I always wonder if they have explored the growth hormone deficiency angle. This is something else that can cause terrible tiredness and it often goes with hypothyroidism because both are controlled by the pituitary gland. If the pituitary gland is damaged by a head injury or a tumour, then more than one pituitary hormone can be compromised, not only growth hormone and thyroxine but ACTH which stimulates cortisol production and LH/FSH which stimulates sex hormones as well. A whole range of possible deficiencies!
Thyroid medication is relatively cheap. Growth hormone is expensive. Guess why doctors are happy to diagnose hypothyroidism but fantastically reluctant to give a glucagon stimulation test for GH deficiency! The Pituitary Foundation is a good source of information if you want to know more, or our website Christopher Lane Trust.
The simple answer is to buy yr own b12 and self inject
So tired of the battle with useless doctors.
So, so tired and fed up with GP's 
Normal bloods still so tired 😞
More results… still tired but so much better 
