Hi all, I’ve suffered symptoms of hypothyroid for over 4 years. My bloods always came back with elevated tsh and positive for antibodies, however as t4 levels were still in range or borderline I was never medicated. I eventually gave up trying to get GP to listen to my concerns over symptoms. I have ulcerative colitis and at my annual checkup last month they ordered full blood work. I got a call from team as the bloods showed underactive thyroid and instructed me to go to GP. I had an awful experience with GP when I asked what my levels were. I was told that I was not medically trained and that I didn’t need to be concerned about them. After insisting I had a right to know she reluctantly gave them to me. My TSH is 68 and T4 is 3.9. I have been prescribed 50mg of thyroxine and have to get bloods repeated in 5 weeks. I’m slightly relieved to know there is a reason I’ve been feeling so lousy for the last year but it’s a bit daunting given attitude of GP in disclosing results. I want to be informed so I can do everything to get myself better. Has anyone else encountered hostility when asking for blood levels. How do my levels compare - are they very high or standard for someone diagnosed with hypo?
Newly diagnosed: Hi all, I’ve suffered symptoms... - Thyroid UK
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Oh dear - one of those GPs! Yes many of us have something similar. Other than the fact that your TSH is obviously raised it is hard to tell what your FT4 at 3.9 is high, low or middle, without the range too. In future don’t ask your doctor for results...the receptionist is the best to ask, she will have, I hope, been told by law you can get the results and will just print everything of for you! It is the FT3, the active hormone, that is the most important figure, but Gps or nhs-used labs rarely do them unless other figures are way out. Yes you most likely should have been given some Levothyroxine 4 years ago, but they were probably waiting for a TSH over 10 first. Did they test last year routinely, or have you got worse and they are responding to that? At least now the 50 mcg levo, and retest in 5 weeks ,is good as long as the GPs then raise another 25 mcg if appropriate .... try to get your TSH down to 1 or under. Your Gp might be happy stopping at 4/upper end of range, but persist in getting each 25 mcg increase to get TSH down. You realise with Hashimoto’s your thyroid results might fluctuate up and down unpredictably as antibodies attack the thyroid gland , resulting in the dumping of hormones into the blood stream...hopefully your dr. won’t keep upping/ lowering your Levothyroxine dose as the TSH goes up and down too. The forum might be your better companion than the physicians sadly.
Thank you so much for taken the time to reply Judith. She didn’t give me the full ranges but this is what she said...
TSH was 65 but should be under 4.2
T4 was 3.9 but should be over 12.
I haven’t been tested for it in the two years at least. I just gave up going to GP about it as nothing was being done. I have another auto immune condition UC and it was at my annual routine checkup at the hospital they ran those bloods - not sure why they checked thyroid function as don’t think they normally do and it was they who rang me to tell me to go to GP straight away.
I will definitely go the receptionist route when requesting a copy if bloods next time.
I think I would be asking for copies of test results going back a few years to see what has been tested and the results. I would then write a letter pointing out the error of their ways to be attached to your notes.
Also test B12 - Folate - Ferritin - VitD. All need to be optimal for you to feel well and for your thyroid hormones to work well.
T3 levels need to be good to help your gut - also VitD. I have had Crohns for over 45 years.
Being gluten free can help to heal your gut - and for me cows milk is upsetting but I am OK with sheep and goat yogurt/cheese here in Crete ...
Hope you soon feel better 😊
Thanks for taking the time to reply Marz. I can see from the blood order form for 5weeks time she has requested TSH, anti-TPO, T3, T4, B12, folate, Mg, VitD, ferritin, iron, bone profile so hopefully that will give a better picture. I have an ileostomy due to the UC and I’m worried about sufficiently absorbing the Eltroxin.
I will definitely try get copies of previous bloods.
Thanks for all the advice. It’s all very daunting and overwhelming right now.
Just a slight concern re your future bloods ...you need FT4 and FT3 ( F=free) rather than just T4 and T3. She asked for one thyroid autoimmune antibody TPO, but there are two, the other TgAb is rarely tested in NHS but I for eg had ok TPO but very raised TgAb, so just getting ‘negative’ for TPO might not mean you haven’t Thyroid antibodies. In theory you can get levothyroxin in liquid form, vit D with K2 also in sprays and drops, and B12 to go under the tongue if your Crohns does give you even more problems with absorption of much needed hormones/ vits/ mins...you could ask your gut specialist.
Just re checked the bloods order and it’s only T4 and T3. Should she be asking for FT4 and FT3 instead or all 4. I’m going to have do some reading as not sure what the difference is. Should I wait for the next results before taking supplements or should I try start them now?
It is just possible the drs. and lab use T4, T3 as ‘shorthand’ at they know it means FT4/3 but I wouldn’t assume the lab knows what they mean...also slightly worrying that the Gp doesn’t seem to know what needs testing...suggests they wouldn’t know anything about the results either. Better to leave off supplements till after bloods, some eg biotin can interfere with results.
You took the words out of my mouth. Yes indeed Nini79 should get the complete history of her levels - and then take steps to report all of the time that the ignorance of her GP has probably caused many of the other health problems she has. TSH of 65!! What is the matter with this doc? TSH is the only thing they usually have the slightest inkling about, this doc doesn't even understand the most fundamental factor. Change doc Nini.
Sorry to hear you are unwell. Any chance you can change GP? You really need (and deserve) a GP on your side and not someone who dissmisses your questions. Most posters on this site are not medically trained but many of us have become expert patients in our thyroid out of necessity.
Good luck
Michael
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer 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.
Your GP was completely unacceptable to be so hostile. Suspect this is because your care has been totally inadequate. So she's on the defensive
With raised antibodies and raised TSH you should have started treatment years ago
A TSH of 65 is very high
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
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 Thyroid antibodies are raised
The aim of Levothyroxine is to increase the dose slowly. Retesting 6-8 weeks after each dose increase. Levothyroxine is increased in 25mcg steps upwards until TSH is under 2. Many need TSH under one, and FT4 is in top third of range and FT3 at least half way in range
Essential to regularly test vitamin levels and very common to need to supplement some, or all virtually continuously
It will take around 4-6 weeks to start to feel the effect of your first 50mcg dose. It's not uncommon to feel rather weird to begin with, it does improve as dose increases.
If your surgery is signed up and using ‘patient access’ website/app you can log in and see your medical notes and blood results. If you don’t feel supported by your GP I would suggest politely asking to see another. Remember GPs should be treating symptoms and not relying solely on blood results. You already have one auto immune disease (Colitis) and it’s very common for people to develop other auto immune diseases, so your GP should be looking for signs of other such diseases. GPs think we’re all just googling everything but the truth is that we are intelligent people on forums such as this digesting up to date articles and so we can question their knowledge, politely!
Patient Aceess is only one way to access one's health records, there are quite a number of them, including Patient Access, Evergreen Life/i-Patient, SystmOnline, Engage Consult, Patient Services, The Waiting Room, Dimec, myGP, digi.me plus.
After what seemed to be a virus infection I was diagnosed with "Subclinical" hypothyroidism. I was advised (by someone in this group) to ask for a clinical trial of thyroxine. Thankfully some at least of the people at my surgery (I usually see the practice pharmacist) seems a lot more enlightened than many.
Looking back I had gradually growing hypothyroid symptoms for several years before that, but the infection brought it to a head. My tested TSH levels were never over 6, and I could barely function, and still felt unwell when they were just under 3. So how you coped with such a high level I have no idea!
This is the start of what could be a long journey to get properly adjusted so you hopefully feel normal again, but don't give up. This is a brilliant forum and I've learned so much from it.
Not suggesting you sue, but it really sounds as if you have a case for neglect against that doctor.
You may have noticed this site is run by Thyroid U.K. who have an excellent site so well worth a look as lots of good info.
Thank you everyone for your replies. I will definitely be changing my GP. Just need to do some research and try find one that’s sympathetic to this condition.
Good place to start thyroiduk.org 
I’m in Ireland and unfortunately there doesn’t seem to be an equivalent organisation here ☹️
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