Just posted on a different link. Then picked up on this. Been hypothyroid over 35 years, but to be honest never realised the impact there could be until recently. For years on the same levothyroxine dosage. Tested once a year. Told things were OK. Never questioned it or thought to ask for results. But wouldn't understand them anyway. Now after years of problems; being diagnosed with fibromyalgia, and feeling really ill for last two years, with thyroid blood tests and dosage of levothyroxine changing every six weeks I suddenly had a light moment and thought there could be a link , and maybe my problems could all be to do with my thyroid. I asked my gp to see endocrinologist (I have never seen one), but she said it wasn't necessary. I don't think she is any more clued up on thyroid problems than I am, and I have suddenly realised how serious it is. I don't know what to do next as even if I ask for my latest results, and get them I wouldn't be able to decipher them properly or make a case for any treatment. I don't even know what exactly they have been testing or what the 'normal' readings should be. Can anyone help me. I am desperate.
New here - need help: Just posted on a different... - Thyroid UK
New here - need help
Getting test results is first step
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.
Come back with new post once you get hold of results
Fat too frequently GP only tests TSH ....this 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
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
Fibromyalgia is often linked to being under treated and hypothyroid...with low Ft3
Likely to have low vitamin levels if under treated and getting vitamins tested and supplement to bring to optimal levels can significantly reduce symptoms and is first step
Come back with new post once you get full Thyroid and vitamin testing
Thanks so much for your help.
Few links about fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
thyroiduk.org.uk/tuk/relate...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
clinicaltrials.gov/ct2/show...
Do NOT accept dose changes based just on TSH
ALWAYS get FULL Thyroid and vitamin testing
Currently UK treatment of thyroid conditions is in the dark ages.....and going backwards....hence over 104,000 members on here
Essential to regularly test vitamin levels and supplement to maintain optimal vitamin levels
ALWAYS get FT3 and FT4 tested
ALWAYS do blood test as early as possible in morning before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test
Thousands of members forced to get tested privately via Medichecks or Blue Horizon
How to get TSH as high as possible
thyroidpatients.ca/2020/01/...
I appreciate all your help and information and get everything you say. The only thing is, I have been hypothyroid over 30 years and never questioned it , (well i did once but was told not thyroid problems, I had fibromyalgia) and just accepted doc. knows best. Since feeling really ill, I have made the link between fibromyalgia and thyroid again, and to be honest feel totally overwhelmed by all the details I am getting back.. I am going to try my best to get on the right track, but admit I feel daunted with having to get private blood tests and then analyse them all. I feel ill anyway. My head isn't in a good place, I no longer drive, my husband has dementia and isn't very mobile, so I am finding everything quite stressful, without the thought of taking extra things on. I do hear what you say, however and realise that if I do want to get well, I have n o choice, I will have to get on with it.
I think we all felt that way .....it would be wonderful if medics were correct ....my GP said at my diagnosis 27 years ago .....”just take this little white pill everyday...soon be completely well”
Wouldn’t that have been wonderful. Sadly extremely untrue
24 years later ...I joined to forum. Only then made progress
I started reading the forum everyday....saw again and again and again the importance of good vitamin levels and just how common gluten intolerance is
First step is get copies of your recent test results from receptionist. Don’t ask GP.
Just ring receptionist. Say you would like printed copy of your recent test results. You don’t have to give any reason why. You are legally entitled to copy Allow 2-3 days ....then pop in and pick up
Come back here and write a new post adding your results and ranges
Eg
TSH 1.58 (0.4-4.8)
Ideally GP would have also have tested the following - but these days due to budget cuts that’s rare
Ft3
Ft4
Vitamin D
Folate
Ferritin
B12
So thousands of UK patients are forced to get tested privately
But step one .....get results from GP
come back with new post.
Members can then advise on step two
Thank you for your help SlowDragon.
Have just seen your Post on the Fibro Forum. Read that you are seeing a Private Endo. Is he from the Thyroid UK list of Thyroid friendly Endos ? Most Endos are diabetes specialists and know little about the thyroid - so research carefully.
As mentioned before if would be far better to share your Private Bloodtest results here for excellent advice rather than spend on an Endo who may or may not help you. Very few prescribe T3 if that is what you need - nor do they know the importance of vitamins and minerals.
Sorry you are feeling poorly - we have all been there until correctly treated or even diagnosed with Hashimotos. 💐
Hi Marz. No. It will be a local Endo. Didn't get as far as Thyroid UK. Made on the spot decision on Friday's visit to doc. Told her I wasn't happy and would like to go private as long waiting list on NHS. She is going to set it up locally so don't know who yet. I realise that isn't what you recommended, but that is what is happening so far. Unfortunately, I have not been in a mental state to work out a formulated plan, I am stressed out, so am playing it pretty much by ear. My intention at the moment is to try and obtain paper print outs, whenever that might be; run results by you or someone else who understands them and see whether I need to take any further tests, before I see endo. Then take results with me. and see what he has to say, if that makes sense. I am taking each step at a time, bearing in mind I don't feel well, my brain is like mush, and I will have to take my disabled husband with me, whatever I decide to do. I cannot just be single minded and do it like a military operation. He doesn't understand any of this but is questioning me all the time, only really interested in how things will affect him.
So sad for you - but you are doing really well and taking things slowly is just fine too. Getting your results WITH ranges will be a huge step forward. So many brilliant people here to help you.
When I was diagnosed with Hashimotos back in 2005 I was 59 and I had been ill for so much of my life. I was in hospital for 22 weeks when I was 27 - 5 operations and diagnosed with gut TB and then Crohns. Horrendous treatment for the TB and further surgery for Crohns with abscess complications over the years. Had spinal surgery in Germany in 2007 and a hip procedure in Crete in the same year to open a tendon and remove a benign lump. 13 operations.
So now at 73 I am finding wellness and mostly thanks to the suggestions and guidance on this Forum since 2011. We have to take care of ourselves sadly as thyroid knowledge within medicine is shocking ... so believe me I understand everything you are talking about. I am just so glad I keep reading and learning from others who know more than me 🌻
Thanks Marz. I will keep you in the picture, when anything to report.
Hi Marz. Had to dash off yesterday, sorry, and I was so sorry read about all the health issues you have had to deal with over the years. Puts mine into perspective, I think . I hope I have read it right and that you have had a fairly positive outcome in the end. I do hope so. Moving on, if you can bear to read it . I am at the moment in meltdown. Already this morning had a screaming match on the telephone, and another one with DH. Now all I want to do is weep. Contacted health centre re paper records. Asked for them as a matter of urgency, as needed them for an appointment. All very civilised. Was told would have to wait 28 days. Said no way. I was told on Friday it would be two or three days. Brick wall. It is 28 days. Said why wasn't I told that on Friday, as no way would I have gone ahead. (Little did I know things would only get worse). No response. I said in that case, then I would go back to getting access on line, but would need help. Was told needed to request it in writing. Said already put it in writing on Friday. Told it had to be done on computer. Then be OK'd by doc. Said doc had already OK'd it. Had to be done again. Said why wasn't I told all this on Friday, - 'don't know'. TOTALLY UNBELIEVABLE. Frustration setting in. Said when people are ill they deserved help and respect, especially in a doctor's surgery, not what I consider to be obstruction, when trying to obtain what they are legally entitled to. Got absolutely no response. Put phone down. FURIOUS. Then had screaming match with OH, as he asked questions, 'What have you been doing?' Explained. 'Why don't you ask them what to do then? Grrrr. Explained. 'Well put in a written request then' (He was with me when I did it on Friday). Grrrr. 'Well you will just have to wait then' .Grrr. I know it is not his fault, and I do feel bad, but what I needed was some support and a little understanding. He never even gives me a hug anymore, even though I tell him it would help a lot. He is living in his own bubble and he is certainly not living with whatever I have, and my patience is out the window at the moment. So, ever the optimist, had another attempt to access application on line and eventually found info on what to do. YIPPEE. Only thing is, it is only available on apps on certain phones, which we haven't got. They hope it will be available on line in early 2020. Better luck then, then! Back to the drawing board. I am now going to leave it until I go to docs. for a physio appt. on Wednesday, when I will hopefully I will have calmed down, take it up again face to face. Thanks for listening.
I have only just picked up your message as you inadvertently replied to yourself above and I did not receive an alert !! I saw your reply to someone on TUK so decided to check you out 🤔
Sorry you are being given the runaround - just remind them they are breaking the law. Ask for the most recent results when you go next and then they can take their time over earlier ones. Hope they are not tampering with them. There is a link on the NHS website about obtaining results- should be easy to find.
Yes I have had a positive outcome with health since reading and learning from others and taking control. We have to be our own health advocates. I self medicate for thyroid and self-inject B12 ..
Has Hubby had vits and minerals checked ? B12 - Folate - Ferritin - VitD - ? Low B12 is linked to brain shrinkage.
I would go ahead and do the Private Testing and you will have the answers you need within a week. Do not let your surgery hold you to ransom ... YOUR body - YOUR health. Good luck !
Show them this
england.nhs.uk/contact-us/foi/
Thank you Lora7again. Just had a quick glance, really have got to get moving with other things today, still in my pyjamas. I will have a better look later, but think It mentioned on- line stuff. Unfortunately I am a Luddite. but from what I researched at the weekend (if it is the same thing) it is not coming on line until 'spring 2020'. and we don't have the phone or ipad mentioned for access now. Also it also seems to have quite a long processing time, so maybe 28 days for a paper printout at the health centre isn't as bad as I thought. Silly me to think modern technology meant things would be quicker. Will I never learn. Thanks for your help.
Thank you Marz. Sorry to say, finding it all so hard. I know everyone on here wants to help, and is giving me brilliant advice, but at the moment I feel like I am fighting a war; things are slipping away from me, and I have no chance of winning. Cannot help it, if this isn't supposed to be how it goes, it is how it is. On Friday I felt positive and decisive . Today I feel exhausted and despondent. There is just too much going on, all at the same time, for me on my own to keep on top of it all. But I don't have a choice so I can only do my best. Lots of other medical issues to deal with for both of us, is not helping. Doc appts., Hosp, appts., clinics, blood tests, assessments, visits from social workers, etc. and tomorrow it is physio. The calendar is full, and it goes on. Am just about hanging in there, so at the moment, I can do without any more verbal confrontations. I will do what I can, when I can and keep you in the picture. Thanks once again for all your help and advice.
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