Hi I had overactive graves thyrotoxicosis which was ablated using Radioactive iodine. The TSH levels are currently (Aug 19) 4.42 (range 0.3-5) and free T4 12.2 (7.9-16). I have gained weight and also have PCOS but heard that ideally TSH should be lower than 2 to be optimal. My doctor said as it’s in range it’s okay but has agree to do another test to see where it’s at today. Would Higher thyroxine help me to bring my weight down and potentially help with other symptoms (joint pain, brain fog, low energy).
High TSH, mid f T4 graves ablated thyroid now o... - Thyroid UK
High TSH, mid f T4 graves ablated thyroid now on thyroxine
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jsy_girl
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Hello Jsy_girl
Yes, yes, yes and yes !!!
Welcome to the forum.
Ok when on thyroid hormone replacement - T4 Levothyroxine we generally feel better when our TSH is down to around 1 or maybe even lower.
Your T4 - Levothyroxine needs to be slowly increased every 6-8 weeks by 25 mcg increases, until you feel well and without symptoms and your TSH will corresponding go down and that's how it works in principle.
Once on any form of thyroid hormone replacement it is important that you are dosed and monitored on T3 and T4 blood test results. T4 is a storage hormone and this needs to be converted by your own body into T3 which is the active hormone that the body runs on.
Your conversion of T4 can be compromised if your vitamins and minerals are not maintained at optimal levels so it's good to get readings of your ferritin, folate, B12 and vitamin D and these need to be good within NHS ranges, and not " just somewhere " .
T3 and T4 should be balanced and most people feel well when both T3 and T4 are in the upper quadrants of the ranges at around a 1/4 ratio T3 to T4.
If you haven't heard of the Elaine Moore Graves Disease Foundation website you might like to dip in there for back ground reading and of course, you will always find support and advice from this amazing forum.
I too have Graves Disease, diagnosed in 2003 and had RAI in 2005.
Thanks so much for your reply. I had such a difficult conversation with my doctor this morning about it. I am not hopeful she will help me with getting this better balance so I think I will try a different GP when I go back after the tests. They don’t test your T3 though, ever! Why is this? I will check out the link you shared too. Thanks for making me feel a bit better following that horrendous conversation with my doctor this morning.
I'm sorry you do not appear to have any confidence in your doctor and I hope you'll be better served with another.
It does seem a bit of a lottery but lets just hope you pull out a lucky number, though of course, medical matters shouldn't be this.
I guess the other alternative is to ask that the hospital keep an eye on you, as you are currently without a doctor - I know I did this but for the reason I wasn't with a permanent address and wanted some continuity of care, whilst seeking accommodation.
As for T3, yes, well, I was surprised too, since paramount for people with Graves but there you go : you may hit the jackpot and have a doctor who understands and supports you, though you may have to pay for these blood tests yourself, and know more than the professional.
Many people on here are having to self source their T3 as currently local CCG's have black listed Liothyronine and it's very much dependant to where you live, if your hospital is allowed to prescribe,
There's a big back story regarding the price of T3 - which I'm sure you can dig out for yourself.
SlowDragonAdministrator
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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 after Graves or with Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
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 ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
PCOS often linked to Hashimoto’s
SlowDragonAdministrator
After RAI you will eventually need to be on full replacement dose levothyroxine
guidelines by weight might help push for dose increase
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on 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.
gp-update.co.uk/Latest-Upda...
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Firstly thank you so much for your detailed and comprehensive response with links. This is very useful - you have no idea!
I have always taken my thyroxine in the morning without fasting and then been tested so my TSH levels are higher in spite of this!
Plus those dosing levels are waaaaaaay out for me - I'd need to triple my dose. No-one has ever mentioned it before.
Do you know what having the T3 tests would tell me?
I do have private health care with work so my course of action will be to wait for these next blood tests and then depending on how the doctor responds try to get a referral and I will go private so that I can also get the other blood tests done plus get some connected to PCOS.
We ALWAYS recommend getting FULL Thyroid and vitamin testing BEFORE booking any consultation
Frequently need to improve vitamin levels first
If I am going private should I still get full testing first? I would need to use something like medichecks for this.
I just asked penny Annie below about doctor recommendations because the one that comes up as private is same as the one I saw in NHS and he discharged me with a TSH of 4 so not hopeful.
I’ve also read in some posts that Teva brand isn’t great and having now been tested at levels of over the range my dose has been upped to 75mg but that’s now Teva.
My latest results are:
Vitamin D 65 nmol/L
serum TSH 9.39mu/L (0.3-5)
Serum T4 11.2pmol/L (7.9-16)
B12 551 ng/L (120-900)
Crp 2.0 (0-5)
I’m also taking quite a lot of supplements as I also suffer with PCOS. Is there anything I should be wary about with regards to them and interactions with thyroid?
I take:
Inositol 4g daily
B5 500mg daily
B6 100mg daily
B12 1000 ug daily
Berberine 500mg x 3
Jarrow formulas glucose optimiser X4 daily
Zinc picolonate 22mg daily
Magnesium glycinate 800mg daily
NAC 600mg daily
Inulin
Probiotic
Vitamin D 1000 iu daily
Lastly I also read a lot of thyroid sufferers work better gluten free. I read I should have a coeliac test first, is that right?
Sorry lots of questions. Any help much appreciated just a bit overwhelmed by it all right now! Thank you
Good that you got dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Always testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Many people find Levothyroxine brands are not interchangeable.
What brand were you on when on 50mcg levothyroxine?
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. But it’s a Marmite brand...some love it ....see how you get on
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 you do need to be avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva and Aristo are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
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
verywellhealth.com/best-tim...
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)
I was on accord. Thanks for sharing those links I shall keep an eye out for any side effects. What is “yellow card” as some people have said?
As I am insulin resistant PCOS I did think a lactose free tablet would make more sense for me.
I am also going to switch to taking it at night as I have so many supplements to take I thought this would be the best time to take it away from any other food. How long before hand should I have eaten dinner? Is 2 hours sufficient? And if I then take it at night should I skip that dose ahead of blood tests to maintain the 24 hour gap?
2 hours after a standard meal probably fine ...better if it’s a bit longer
If it’s a feast you can take levothyroxine in middle of night when you get up for the loo
Quite a few people always take their levothyroxine in middle of night
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
Yellow card
Thanks - yes most of the time it will be longer anyway. I always used to take at night and then read it was better in morning so I switched. But will try going back to night time.
Never knew that about yellow card. I should have reported a terrible reaction to ketoconazole years ago haha. Ended up in A&E over new year because of it once! Ha!
Any advice or ideas on finding a doctor? Can I ask in this forum for recommendations for thyroid friendly private doctors in essex. The only one that thyroiduk recommended was my NHS doctor who was non too successful for me. Will see him again if he really is best...
Email Dionne at thyroid uk for the NHS and private lists of recommended thyroid specialist endocrinologists
List gets updated quite frequently
tukadmin@thyroiduk.org
Any endocrinologist who thinks TSH of 4.42 after RAI is ok...needs to not be on any list
Extremely important to regularly retest vitamin D, folate, B12 and ferritin
Vitamin D
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
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...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But on levothyroxine , improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/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 vitamindtest.org.uk
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
It’s trial and error what dose we need
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
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...
Importance of vitamin D for fighting Covid
moxafrica.org/post/the-vita...
Generally we recommend supplementing a good quality vitamin B complex rather than single B vitamins
Is there any reason you aren’t taking vitamin B complex?
PCOS is frequently associated with Hashimoto’s
It’s possible to have Hashimoto’s and Graves’ disease at same time
Have you had both TPO and TG antibodies tested ?
Was Graves’ disease actually confirmed b6 high a TSI or high Trab antibodies?
Both Hashimoto’s and Graves patients frequently find strictly gluten free diet helps
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
Thanks. Ok I will up my dose of vitamin D. I was using the 1000 ui Better you mouth spray but will switch to a higher one with K2.
There is no reason I wasn’t taking a vitamin b complex but I just slowly added one after the other. But I am now planning to swap to jarrow formulas glucose optimiser which is a b vitamin complex with chromium. Only thing it doesn’t contain is folic acid and I did wonder if I needed that.
Haven’t had any antibodies tested for a while and who knows whether they did it before. I was quite unaware of anything they were doing until now and everything I’ve learned in the past couple of months from here and thyroid uk and my nutritionist. Graves’ disease was confirmed but I don’t know how it was confirmed if that makes sense.
If I had a coeliac test done before and it was negative do I still need to get it tested, like is it something I could develop later in life? I’m sure I had it tested about 15 years ago when I first got hyperthyroid as I also had IBS. But it was stress related. I then had an endoscopy and it was perfectly fine according to the hospital.
If you have been tested for coeliac it’s probably not worth repeating
Just try strictly gluten free diet, see how you get on
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
Unfortunately a lot of us have lost confidence in our doctors because they have to stick to NHS guidelines. This site will be a lot of help to you but you should also look at Elaine Moore's site because she helped diagnose me over 10 years ago when my GP said I suffering from the menopause. You can read my story on my profile page if you are interested.
Hey there again :
The body runs on T3 not T4 and it is low T3 that causes the debilitating symptoms of hypothyroidism, and conversely high T3 that causes the equally disturbing symptoms of hyperthyroidism.
Levothyroxine, T4, is a storage hormone and your body needs to be able to convert this into T3 which is the active hormone that the body runs on, with most people using about 50 T3 daily just to function.
Your ability to convert the T4 into T3 can be compromised, if your ferritin, folate B12 and vitamin D are not maintained at optimal levels in the ranges, and this maybe something you may have to supplement yourself as just being in the NHS ranges somewhere, is not necessarily at a high enough level when hypothyroid.
We generally feel better and with fewer symptoms when our T3 and T4 are in the upper quadrants of their ranges, and sometimes running with a T4 slightly over range, and this will probably result in your TSH going much lower in the range, and probably well under 2.
As you slowly increase your Levothyroxine this should in turn convert into T3 within your body and your symptoms of brain fog, aches and pains, and fatigue reduce and with your metabolism restored your weight should return to what is ' normal ' for you.
The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.
Either way, if you haven't a thyroid producing any hormones at all, you have ' lost ' your natural production of T3 and that equates to approximately 20% of your overall well being.
I hope that explains your question as to the value of T3 and why you need it measured.
Really helpful thank you. I am going to get a private referral as just had my blood test results (standard NHS ones) come through and they show TSH of 9.39 and T4 of 11.
My vitamin D also looks a bit low at 65 nmol/L.
I also got B12 tested at 551ng/L
I am hoping he will test T3. And also look into my iron levels.
Is there anywhere on this site for recommending good doctors that will try to manage you into optimal ranges rather than just NHS ranges. I really want to get my TSH down to 1 sort of area.
I have been given more thyroxine to be getting on with but doubt it will be enough at 75mg!!
Thyroid uk hold a list of " thyroid friendly " doctors/endocrinologist and suggest you email Dionne at Head Office.
It's also worth subscribing and becoming a member of this charity as it's very supportive to all of us, raising awareness and campaigning on our behalf for better thyroid treatment
As ever so helpful. I’ll get on that straightaway. Do you think they’ll be able to cross reference with PCOS as I have both so that would be ideal. Thank you
No idea - but just ask, Thyroid uk a such a lovely bunch, if they can they will :
I got the list but actually the only doctor close to me was the doctor I actually saw on the NHS. He was okay but he discharged me with TSH readings of c 4 and so I don’t have much hope of getting him to manage down to sub 1 range. Is it okay to ask for recommendations by name in this forum if anyone has recommendations for private doctors in the essex region?
Yes, you can pose the question on the Main Forum and ask that if anyone has any information that may help you that they kindly use a PM ( private message ) :
It will take minimum of 6-8 weeks for latest dose increase to have effect
Meanwhile work on improving low vitamin D
No point seeing any endocrinologist until after next blood test
Likely you will need a further 25mcg increase in levothyroxine
If GP won’t increase after next test (assuming test suggests you need further increase) ....that’s the time to see endocrinologist
Will pm you
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