Hi, has anyone had these symptoms? Things are getting worse, especially cold intolerance, with temp35.4 Cfollowed by terrible shaking which leaves me with awful neck,head,spine, joint pain. My hair loss has increased and I have awful night sweats , where I have to change bed etc...(Had early menopause in my 30's, now 64)TSH results up and down....on 100mcgs thyroxine. Falling asleep and dragging myself around most days. (GP questions whether I am taking medication.....what the..?) Spoke last year with Endocrinologist- worse now.
Any suggestions gratefully received. I do have some private health insurance, but as yet have been through NHS.
Pamela
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Charlieboots
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Do you have any recent thyroid and vitamin results to add?
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too often only TSH is tested which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
Ask GP to test vitamin levels NOW
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
Thank you so much. There is a lot of information and help there and I am grateful and so pleased that someone would take the time to reply to my me after such shocking treatment from the GP.There are a lot of results on the form but not those. TSH is 10.71mU/L and T4 is15.2pmol/L I have only just got your message.(Not very tech happy). It gives me hope.....I couldn't get up Good Friday I go almost semi comatose...just getting up for loo and the dogs. There has to be something more that can be done. Kind regards Charlie
I’m so sorry you’re experiencing such horrible symptoms. I had the same when I was very under medicated.
Do you have your most recent set of blood test results? If not ask the support staff for a copy. You are perfectly allowed to. Then post those results here.
I had to use my private medical insurance as my nhs treatment was horrific. The downside is you often pay for your own medication. Although my GP still provides my levothyroxine to be fair, I pay for my T3. x
Thank you for your reply.Ive only received it today. Not very tech happy.I do have some private insurance.Just in a muddle how to sort myself out when I feel so ill! My TSH was10.71 and T4 15.2. The rest of results are a mystery. It does give me hope that people do care and are willing to share advice. Thank you again. Charlie
You absolutely need an increase of levothyroxine. Personally I’d request an urgent appointment albeit by phone and say you want an increase to bring your TSH back down to normal in order to feel well again.
It would be really good to know what your fT3 is to see if you convert t4 into t3 well or not. I very much doubt your doctor will have done that test. They clearly are clueless about the thyroid.
You can see an endo on your private insurance and they can run all the relevant tests (except the gene DIO2 mutation test for t4/t3 conversion as that needs to be done by regenerus). They can send a letter to your GP to increase your dose which will help. But you have to pay for your own medication is the only downside if your GP refuses. Although I doubt they will. But first off I’d request an increase from your GP. See if they will help. They absolutely cannot leave you with a TSH that high. It’s unethical.
Get all your vitamins checked out too, vit D, ferritin, folate and B12. They all need to be optimal to help you feel better.
Personally I’d increase your levo to 125mcg from 100mcg now. Today. Regardless of waiting for a GP appointment. Break a tablet into four 25mcg pieces and take one a day with your 100mcg tablet. It’s a start. Xx
Overwhelmed by your knowledge! You clearly have either been through this or know someone who has. My insurance has a GP helpline, who can refer you. (I spoke to Consultant Endocrinologist 12 months ago,who was not helpful and did not order any tests or further investigations. How bad do you have to be before they take notice.) Finding this site has given me hope and also courage to ask for help.
I’m going through it now. We all feel your pain here. I learned so much from this group.
If you email thyroid uk they will give you a list of thyroid friendly endocrinologists: tukadmin@thyroiduk.org That may help you find one with the experience you are needing.
But first I’d go back to your GP with NHS guidance for dosing with levothyroxine as they are clearly leaving you hugely under medicated which is so wrong. They clearly need to see it. You’re not even close to the top of the range! Most of us need our TSH to be 1 or under to feel well. I most certainly do. No wonder you’re feeling so bad. While you’re there ask them to test all your vitamins as mentioned above. It’s so important for vitamin D to be optimal as Well as the others to give you the best chance of recovery. If they won’t do it your private endo will or Blue Horizon do them (30% off code TUK30). Post your results here and people will help you.
You may need to increase a few times before you see a huge change. In which case keep an eye on your ft4. We don’t know your ft3 which would be really helpful. But concentrate on an increase first so you hopefully start to feel better ASAP and go from there.
Most endocrinologists are diabetes specialists and useless
You need thyroid specialist endocrinologist
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
Many consultants are currently doing consultations on zoom
Initial consultation is typically £250
But before seeing any thyroid specialist, you need to get thyroid levels retested 6-8 weeks after dose increase
Plus essential to get vitamins optimal. Ferritin needs improving.
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
I live in West Wales. There are no GPS on Thyroid UK but 2 consultants, one in Cardiff and one in North Wales.The Endocrinologists have spoken to, the last one 12 moths ago was a Dr Rice, very pleasant but referred me for chronic pain help(? I have had multiple spinal fractures and neck surgery. The other one tested me for menopause, in spite of my telling him I went through it in my 30's!
The best chance I have is to try and go through my health insurance to speak to a GP who can then refer me, presumably to a thyroid orientated Endocrinologist.
I have stopped Teva and have 1+1/4 of Accord.
I am booking blood test for end of April (8 weeks after last TSH and T4). Does NHS test for T3 and nutritional factors? As explained I have had an eating disorder most of my life and do blame myself for some of what has happened. (My mother also had hypothyroidism, pernicious anaemia and diabetes and died aged 66 sadly).
It is difficult to get my act together when I feel so rotten and just want to sleep. It is good to know others are fighting/have fought the same issues and are getting themselves the help they deserve
Meanwhile I will investigate private company for vitamin tests.
Type2 diabetes. So many choices with blood tests privately! Is it worth getting the most expensive? I was looking at the silver option with a pin prick test. Sorry to quiz you. I will read your profile. You certainly are giving back what you have been given. Joined Thyroid U.K. Last night.
Have just read about your incredible battle to get correct treatment and manage your own health. I too was told I wasn't coeliac although on endoscopy my villi were flat, suggesting the disease. I feel like death in the morning so will go for the Blue Horizon test for cortisol and start taking thyroxine at night to see if helpful. Thanks
Not gluten free as I took doctors opinion it wasn't necessary! I have been very naieve/gullible, until recently and have been so unwell. For years my diet has been so restricted I have been reluctant to stop anything, however reading your story and attachments, I intend to try gluten free. I take Prime Fifty Fighting fatigue and started Vit D spray plus calcium tissue Salts.
My temp is orally 35.6 and aurally 34.5 today. I can't get warm.
Waiting to see if Medicheck have discount tomorrow as you suggested.
Thank you for your advice. I think I am getting desperate as GP just told me to 'soldier on'. Good Friday I just didn't get up! My TSHis 10.71 and T4 is 15.2 on 125mcg of accord and MA Holden Teva Levothyroxine. It does give me hope when people take time to read and share help...I am truly amazed at lack of care by GP.
Many people find Levothyroxine brands are not interchangeable.
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
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).
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
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
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Yes, I am vegetarian but have aB12 spray. I had an eating disorder most of my life and struggle at timees. I didn't realize that the different levothyroxine were not tolerated and also about vitamins affecting the dose.Getting courage up to ask for the blood tests. ( I've lost a lot of confidence lately. Finding this site is helping me get it back.)
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
My B12 was539ng/L 26/09/19 result says adequate for 2yrs Ferritin was25ug/L. My platelet count is always high and something called Serum alanine aminotransferase is high36U/L.(now 16)Haematocrit=0.32L/L
Is there somewhere I can look to decipher the results e.g. GFR abbreviated MDRD=77ml/min/1.73*2?
Can I ask the nurse to test my T3? My GP hasn't seen me in 14months and wouldn't discuss T3 with me. Is it a very expensive test that stops them doing it.
I had osteoporosis from age 38 due to early menopause. Now 64 with osteopenia and this past 2 months have started taking Vit D spray.
Bloods should be retested 6-8 weeks after your recent 25mcg increase in levothyroxine up to 125mcg
Get FULL thyroid and vitamin testing done privately after 6-8 weeks on new increased dose levothyroxine
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)
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
date ............TSH...............fT4...........................dose
Oct 20.......4.72 ...............................................75mcg ?
Jan 21..... 0.07 ..............21 [range ].........75mcg ?
Mar 21....10.71 ...........15,2 [range ?].......75mcg ?
Dose now increased to 125 mcg because of TSH 10.71 ?
If dose was recently increased to 125 that was the right thing for GP to do.
Bloods should be retested 6-8 weeks after dose increased."
Charlieboots
"Yes, that's right. 125mcg 4/5 weeks ago. I had to ask for the test and the result......they don't seem to check these things any more. GP said retest in June but I will go sooner."
You're really under medicated clearly if your tsh is at 10. I'd get a call with a doctor and ask for a 25mcg increase. In fact I'd just increase it myself in the meantime. I'd imagine you'll need a further increase but get them to test you in 6 weeks. The route I take us to ask them to support your attempt to reduce your debilitating symptoms which are having a terrible effect on your mental and physical health and relationships... if they argue remind the doc the aim of thyroid treatment is to improve symptoms whilst not having your T3 or t4 over range. Ask them to order tests of those for six weeks time.
With increases in meds you really should start to feel a lot better. X
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