Hi I'm new to writing posts please could anyone help me with bloating putting weight on shattered all the time with all the issues that come with overactive and under active seen my consultant this is my latest results Tsh 4.37 mu/l (0.3-5.5)
T4 18.4 pmol/l (12-22)
T3 3.8 pmol/l (3.1-6.8)
Currently on levothyroxine 125mcg and 2 days at 150mcg don't feel any better. My doctor as left my practice and no one deals with thyroid all they do is consult with consultant who now says my symptoms is not my thyroids and could be menopause and fibromyalgia I had to laugh when he said this I have been reading stop the thyroid madness
Which was in the book
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Tinyowl99
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Have you had thyroid antibodies tested and what were the results.
Your TSH is quite high for the level of FT4 you have. How do you take your levo?
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Your FT3 is low in range and will be causing you symptoms.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
I'm on levothyroxine I had overactive thyroids and graves disease and was on carbimazole which was destroying my liver ended up having radioactive iodine then 8 weeks later didn't feel any better and test showed i was underactive but I feel no different I did have test done last year I currently take 3 days of 150mcg of levothyroxine & 125mcg of levothyroxine 4 days 1 hour before breakfast and coffee I also take 400ug selenium
D3000+k2 vitamin D +K2 daily oral spray
Vitamin B -complex
Codliver oil one a day
Magnesium citrate 1480mg
My folic acid was low and my vitamin D
I don't take any meds before bloods only thing I have is a glass of water my bloods are always around 1030-11 can never get early appointments
Your issue is you aren't converting very well, you're TSH is still too high showing you have head room for an increase in T4 perhaps up it to 4 x 150mcg and see if anything improves but it's looking likely that you'll need to add some T3
Thank you the problem I have when I up my dose is my hair falls out in a week I can fill a freezer bag with hair I have asked my consultant if I could try adding t3 medication as I've been reading stop the thyroid madness (ive found this very good so far) and he won't even talk about it he's now saying it could be fibromyalgia or menopause I feel shocking most of the time but getting nowhere I've got to make appointment at doctors and need to ask for bloodtest but my doctor as left and none of them have any experience with thyroid problems
the last doctors i seen told me to pull myself together eat less exercise more told me I am obese my cholesterol high and its got nothing to do with my thyroid try shoving me off with statins which I refused
They will prescribe T3 and monitor your levels or you could just buy some T3 and DIY and then when you are feeling better do battle with the system (this is the route I took and do now get NHS T3)
Hairloss... how are your iron levels? Are you eating decent amount of protein? Are you taking a decent B Complex?
Is this twerp you are dealing with an NHS Endo?
If your GP hasn't a clue insist on a referral and see if there is a T3 aware Endo in your area that you can name... thyroiduk.org/contact-us/ge...
Thankyou which are best B complex? at the moment I'm finishing some that I already had in cupboard I will ask doctor or if I don't get any joy will have to go down other route the doctor I was seeing was happy to give me t3 but left about I could get back in to see him is there anything else I need to ask that can help me in anyway thank again for your helpI was taking 100mcg of accord levothyroxine & 25mcg of tevo levothyroxine but that's when my hair started falling out I now have both accord I have allergies with alot of tablets and endup worse than what I am for some reason since stopping tevo my hair as slowed down
I am so sorry to hear your Doctor was so awful! How disrespectful and patronising. You may want to buy T3 privately and try that? My symptoms did not improve until I started taking NDT. That you have to pay for and you have to pay a private Endocrinologist to prescribe it. Very expensive, but I have an almost normal life.
Have you considered whether you could have an underactive thyroid AND have menopause? That’s what I have 😂 Sometimes it is not fun to be a woman
Hi thankyou for your reply yes I definitely have menopause and underactive thyroid I hadn't had a period for 18 months then I had spotting then a period that lasted 2 week had to have scans and camera found fibrosis but not big enought to course concern the doctor said but what I don't understand I was overactive couldn't read my bloods because they was off the scale the symptoms i had to start off with I just didn't feel myself i had changed my job position going from doing 6000 steps a shift to 16000 steps a shift i just though i was unfit trembling inside heart palpitations stiffness in joints redhot all the time i refused to go on medication as lots of tablets don't agree with me but after 6 month was told i really needed to have medication they put me on carbimazole which after 2 weeks I felt shocking they then said they was destroying my liver and had to keep stopping them they give me some powders to take and propanolol and symptoms wasn't as bad then they told me I needed radioactive iodine which I didn't question as I thought the consultant knows best ( I wish I never had it) after 8 weeks I had constant sore throat which I had had before doctors did bloods and said I had gone underactive so started on levothyroxine since I've started that I have ever symptoms going the doctor was great and was going to change me on to t3 medication but before I got to go back to him he left the practice I've been back acouple of times but non of the doctors seam to know anything about thyroids and consult with consultant I feel like coming off the medication because I feel worse even when up my dosage I'm new to how things work on the site so don't really know if I'm do right putting all this my husband thinks I'm losing it because the brain fog is so bad and struggling to sleep
Are you able to afford a private Endocrinologist? GPs very rarely know anything about Thyroid (I’m having to explain my Consultant’s letter s to my GP every single time..
And NHS Endos don’t seem to be much better… so many horror stories on here No scope to try anything, unless it’s Levothyroxine and cheap.
I feel I'm in a nightmare and no ending don't know how or where to look for private consultant and to if could afford it as don't know how much it would cost but I would find the money to feel normal again and not like a walking vombee
I'm just in agreement with other forum members' that have replied; please avoid that doctor! He's rude as well as useless, what an a*se!
I had a not dissimilar experience with a GP at my practice, being told to go away, nothing wrong with your thyroid. That went on for a few years.
If you feel able I'd write a short polite letter of complaint to the Practice Manager regarding his manners (or lack of!) and their under treatment of your thyroid problems.
It worked for me as my thyroid problems were then taken seriously and I got an endo referral eventually.
Get the name of the practice manager from the surgery website if you don't know it. Send or take in two copies, one for the offensive GP the other addressed to the practice manager.
Even if you don't feel up to writing to the surgery, please try your best to avoid this doctor. He really isn't good for your health, both physical and mental.
ABSOLUTELY essential to test vitamin D, folate, ferritin and B12
which brand of levothyroxine are you taking
was last dose levothyroxine 24 hours before test
Your high TSH and very low Ft3 shows you are on inadequate dose levothyroxine
Quite likely low vitamin levels
Thousands of U.K. patients test privately in order to make progress
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - with Graves or Hashimoto’s
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when get T3 prescribed……..day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Yes last dose of levothyroxine was 24 hrs before bloodtest only water before bloodtestlast dose was I was taking 100mcg of accord levothyroxine & 25mcg of tevo levothyroxine but that's when my hair started falling out I now have both accord I have allergies with alot of tablets and endup worse than what I am for some reason since stopping tevo my hair as slowed down I'm now on 3 days of 150mcg & 4 days at 125mcg need to stay on this till next bloods or want be true readings the bloods results was with 125mcg
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
How long were you on the Anti Thyroid drugs - were you well on the Carbimazole ?
This toxic substance slowly burns through your thyroid and ultimately your gland will be totally burnt out in situ, fully disabled, with you being primary hypothyroid and with no thyroid function.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be 4 x more powerful than T4.
T4 - Levothyroxine is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs all our bodily functions - from our physical ability and stamina through to our mental, psychological, emotional and spiritual well being - our inner central heating system and our metabolism.
In order for any thyroid hormone replacement to work well we need optimal levels of core strength vitamins and minerals - those being - ferritin, folate, B12 and vitamin D -
and RAI is known to trash vitamins and minerals - amongst other things.
It is essential that you are not dosed on on your TSH readings you Hypothalamus - Pituitary - Thyroid axis is now broken and this feedback loop now open ended as your thyroid now unresponsive and dying / dead - and your TSH a totally unreliable measure of anything -
You must be dosed and monitored on your Free T3 and Free T4 readings -
and these need to be balanced within the ranges at around a 1/4 - T3/T4 - ratio -
and when on T4 only medication the T4 needs to be in the top quadrant of its range -
so with a T4 at 18.40 - and a T3 at 3.80 - if I divide your T3 into your T4 - I get 4.80 showing you wide of the centre and struggling to convert the T4 into T3.
You may feel better building your T4 up into the top quadrant of the range as this should then convert to a higher level of T3 - but ultimately your body is under a lot of stress and the logical next step is to prescribe some T3 and rebalance your thyroidal hormones manually.
Some people can get by on T4 only :
Others find T4 seems not be work as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they are able to restore health and well being.
Some can't tolerate T4 an need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find themselves improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains.
In 2000 all these treatment options detailed above were available from your doctor if Levothyroxine - the cheapest option - did not resolve symptoms of hypothyroidism -
now, both T3 and NDT have been withdrawn from the primary care doctors remit -
and you will need to be assessed for any treatment other than T4 - by a NHS endo - and in some parts of the country due to ICB restrictions - financial constraint rather than medical need is in place and we face something of a a post code lottery -
and the 2nd option of anti depressants - does not work - and simply puts the onus back on the patient who is encouraged to believe it's something else, and likely all in their head.
Obviously if you can afford to go privately there is a different landscape - but you still need to know who is understanding of thyroid health and well being and Thyroid UK the charity who supports this forum holds a list of understanding thyroid specialists. thyroiduk.org
Thank you for reading so far - especially if you are also dealing with the horrible brain fog - you will not like this next bit but I write it everywhere where appropriate so before you see it somewhere else :-
I had RAI thyroid ablation for Graves Disease back in 2005 - knew nothing and simply trusted mainstream medical - I have been very unwell - details on my profile - just press the icon alongside my name.
If you get lost reading around on this patient to patient open forum - just press the Profile icon - top right facing me on my laptop - alongside My Hub - Chat - Post - Alerts and Menu icons and this will take you back to your Profile page and all your posts and replies :
All things Graves Disease - Elaine Moore books and website - elaine-moore.com
OMG like you I trusted my endocrinology consultant he said it would make me better and that everything would be back to normal when i had to go on levothyroxine i said to him what if i cant tolerance them he said don't worry will we come to that when it happens now he's saying it not my thyroids making me feel like this its the menopause and could be fibromyalgia 🤯 and that all my symptoms what I have don't come down to pinpoint thyroid because he's saying that my bloods are in the range when I have taken my levothyroxine every morning it feels like the tablet is stuck in my throat and feels like my throat is burning but its like it for week sometime months I had the radioactive iodine in May last year if I could turn back time I definitely wouldn't have it and wouldn't believe anything that he says it's total bull×××t I've tried putting my journey so far in my profile but it just keeps deleting it I must be doing something wrong
I'm going to try a different doctor and see how I get on if not it looks like been private bloodtest and everything else
I just feel like I'm going mad and don't know where to go forward to feel normal 🥺
RAI is known to trash vitamins and minerals and for any thyroid hormone replacement to work well we need a strong core strength which means optimal levels of ferritin, folate, B12 and vitamin D - and your hair loss could well be down to low iron and ferritin stores -
So first off I think we need a full thyroid panel to include TSH, + Free T3 + Free T4 inflammation, antibodies and these core strength vitamins and minerals and where we all need start off putting ourselves back together again.
Ignore these stupid, hurtful, ignorant comments of eat less and exercise more -
the reality is you need to rest and start replenishing your body with good nutritional food and healthy fats -
and not following punishing regimes that become a vicious circle, increase weight, cause negativity and compound health issues further.
There is a liquid T4 - which might be worth trying as a first step ?
That sounds really good to me I've just done 3 weeks on 150mcg of levothyroxine 2times a week then been told to do 150mcg 3 times a week and 125mcg rest of time but just getting worse I've been for a short walk today had to keep stopped with pains in hips & bum bones couldn't even bend down to take my trainers off when I came back 🥺 am I beat doing the vitamin check first then the thyroid test my friend just come back off holiday so she can help as she does private testing from 1 of the site the liquid t3 sounds good I'm just so fedup and feeling worse everytime I up tablets thankyou so much
OK then, good - we have a bit of a plan of action -
its liquid T4 - there isn't a liquid T3 :
And stop with the trainers - you are not well enough for any sort of exercise except maybe for a gentle walk, twice a day for around 30 minutes at a time.
No counting calories - eat clean, wholesome food and good fats.
Thankyou is the liquid better to get on with my brain fog is so bad when is the best time to take medication someone said in 1 post that they take there's at night I feel like levothyroxine are just making me worse the more they updose the worse my symptoms get I've been taking in a morning then vitamins through the day but feel shocking all day then at night can't sleep I'm lucky if I get 4 hours sleep the last 2 nights I've been waking up with hot sweats yet I've been cold when gonna to bed my cholesterol is high then I've had a message to say make appointment at doctors for results from other bloods that endocrinology took for diabetes & fibromyalgia 🙄 can't get through to them & online they shut appointments down🤯
Well it might be as it seems you do not tolerate the tablets and may not be absorbing them - it's a first step in finding what medication you can best tolerate.
We also need current results and ranges for ferritin, folate, B12 and vitamin D as these can compound your ill health further if not maintained at optimal levels and as already detailed RAI thyroid ablation trashes these core strength building blocks of good health.
The brain fog is caused by too low a level of T3 for you - and generally it is too low a level of T3 for you that causes the symptoms of hypothyroidism.
Tinyowl99 - Just rereading my post above 4 months ago -
Just read through this again - and just hold onto the fact that the RAI will have burnt out your thyroid and you have ' lost ' all the hormones that once supported your brain, body and heart to function well -
your thyroid once supported you with trace elements of T1. T2 and calcitonin + around 10 mcg T3 + around 100 mcg T4 - with T3 said to be around 4 times more powerful than T4 :
You are now taking T4 only :
A combination of synthetic T3 + T4 is a realistic replacement of those hormones we have an idea of a known measure on - with trace elements not seen as essential to be replaced.
NDT contains all the same known hormones as that of the human thyroid gland - and the most expensive of all the treatment options.
If you can afford to go privately - there is a very different landscape - though you will need to know who to go and see - and you will have the choice of being treated with all the thyroid hormone treatment options - as was the case in primary care up to around 2000 and the turn of century.
Thankyou feel like im only just learning about all this my endocrinology been rubbish I've tried tevo and mercury pharma but didn't get on with them when I was only taking 75mcg of accord then 100mcg I wasn't feeling to bad wasn't right but didn't feel like this then they gave me 25mcg of mercury pharma which felt worse then tevo then I asked for accord 50mcg so could spilt so I wasn't mixing earlier in year I missed days because I feel better when I haven't had them I'm so p×××ed offBecause I can't get appointment all they say is go online at 8 then lines are closed😡 friend been busy so hasn't been able to help
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