Talked to a GP today about symptoms, elevated ( not by his standards ) tsh etc. I cried, twice, but he just kept saying " you have not got a problem wirh your thyroid "! I'm in pain and have a long list of symptoms and I feel so helpless! No idea how I'm going to carry on fighting when they are so obstructive!
Feeling so deflated, sorry, needed a moan x
What was your TSH Level? Is there another GP at the surgery who might be more sympathetic?
I know how hard it is to persuade a doctor to listen when you feel so bad. In desperation I visited a private endocrinologist, and he diagnosed my thyroid problem. He then wrote to my GP telling them I needed to be treated. She was very “off” with me after that, but thankfully she retired, and my new GP was fine.
My TSH level has been between 3.1 and 5.8 for the 12 years and I'm currently at 4.8, lab range is 0.34- 4.94.
My ferritin is 18 (10-204).
Ft4 is 12.8 (9-19)
Are they the only tests you've had? You need Antibodies testing. Ask for TPO Ab and TgAb also ask for FT3 to be tested.
If you have Hashimoto's Autoimmune Thyroiditis then the regular tfts (TSH, FT4 & FT3) can fluctuate and fall within 'normal ' range.
Keep seeing GPs with your list of symptoms, asking for a referal to an Endocrinologist and an Ultrasound scan of your Thyroid & Parathyroids.
If they keep refusing, insist they test the Antibodies and make sure you have blood taken early morning and fast apart from water.
Also ask for Vitamin D, Calcium, Phosphorus; B12 and Folate to be tested. You probably have Vitamin D deficiency or insufficiency.
Don't let the GPs leave you feeling intimidated. Don't let previous bad experiences put you off going back. Make them so fed up of seeing you that they give in just you get rid of you !
But don't sink to their level, be polite - but firm.
Is there anyone you can take with you to see the GP - a friend or family member, partner ?
Thank you so much for info. My husband will come , he is insistant he does next time!
I tested positive ( no range) for ANA antibodies last year but gp wrote it off and now I've tested negative for TPO antibodies but my Tg autoantibodies is 6.3 ug/l , I think the test is needing to be <0.9. But today gp has said it wasn't 6.3 and that it was actually just thyrogloblulin tested!!
Also ask for a referal to a Rheumatologist - I think you should have lots of Antibodies tested.
And : write ALL your symptoms down on a list which you can show to GPs and Consultants.
Unfortunately ( or fortunately) I saw a rheumatologist who wasn't interested as rheumatoid factor was low. He checked my hands and said it wasn't ra, but I never thought I had that, it was gp sending me off somewhere again. I've had so many referrals and guesses at what's wrong.
Thank u
Apply to the hospital for copies of ALL your medical records - blood tests results reports and all notes etc. Anyone in the UK can get them now free of charge (since new rules 25 May 2018).
Phone to find out who deals with the requests (probably someone in Medical Records Department or Legal Services ) then send an email or letter.
Edit:
ps - is there an Immunology Department in your hospital?
That's a great idea, I actually work for the NHS, so I know who to contact, I've never thought of that though, thanks
Your welcome.🐥
If you work for the NHS, have you thought about getting Staff Health to help with access to testing? You might want to keep things more confidential though. But can't they get you an appointment with the Endocrinologist? They like to keep their staff in work - don't they ??
Once you have all your records you can study all results and Google any comments and any out-of-range results. Have a close look at where 'normal' results are in the range. Post results & comments etc on here for people to comment.
I Will look into this, thanks, im so glad i posted
x
Yes there is
Have a word with someone in Immunology if you can - see what's required to get referred there for Antibodies tests - mention positive ANA and the fact that you are not on any medication. And, given your list of symptoms & suffering for so long, you think you should really be investigated for Autoimmune Diseases (to eliminate or confirm Hashimoto's Autoimmune Thyroiditis, Lupus etc).
ALSO:
Have a word with someone in Haematology - ask how you go about getting a Full Iron panel tests done. Tell them your Ferritin is bottom of the range.
See if Staff Health will refer you to both (if necessary ).
All the best with this.
You may want to look again at your diet. It may be that you are eating a fully nutritious, healthy balanced diet. But possible absorption issues. Eg, it's better to drink water before, after and with meals rather than tea or coffee. Which is best drunk between meals. Also best to have 100 to 150ml fresh orange juice (or Tropicana extra juicy bits) with breakfast / lunch to assist with absorption of iron. (Or a Vitamin C tablet).
I will look into this thank you, cannot believe the level of knowledge and help people are giving on here, so glad i found it, wish I had years ago x
I felt the same - wish I'd found this forum earlier!
That definitely sounds as though you ought to be receiving treatment. Your ferritin is very low, does your doctor consider that to be fine too?
What exactly are your symptoms? Is there a possibility that you are anaemic? Have you had blood testing for your vitamin and mineral levels?
There are ways of getting private blood tests done, but it would still mean you have to persuade your GP to act on them.
He said its in normal range! I have a huge list of symptoms, 12 years worth. Painful hands and wrists, other joints too, fatigue, dry eyes, alcohol Intoletance, sensitivity to cold, easily bruised, blurry vision, irregular periods, heavy periods, thinning hair ( This one makes people look at me funny cos I have lots of hair, but it is thinner than it was), anxiety , ears ringing and think with all this I'm starting to feel low too! What a sorry state! Think I will look into more vitamin deficiencies.
Thank you
A lot of the symptoms you have are typical of an underactive thyroid, but also could be due to low Vit B12.
You could ask for xrays of your hands and wrists (could be Osteoarthritis, probably have it in thumbs at least).
Ask to be seen in Eye Clinic re blurry vision. Ask Staff Health or go to A&E - ask to be seen this week. GP would probably say to go to your Opticians, that's another option.
The RNIB has a medical helpline for any eye problems. I found them very helpful. Phone:
0303 123 9999
and ask to speak to the medical helpline.
Thank you
All blood tests have to be at the very earliest possible, fasting, and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep the TSH at its highest and may mean the difference between being diagnosed or not. The aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges.
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/testin...
thyroiduk.org.uk/tuk/testin...
Vitamins/minerals also have to be optimal i.e. B12, Vit D, iron, ferritin and folate.
I'm not any medication but I will look Into deficiencies, thank you
Think I'm afraid to go private Incase they say the same and I've wasted money! Ive been intimidated and i need to get over that
Was your tsh level really high when u visited a private doctor? Mine is only 4.8, I'm afraid they will be as unhelpful as my gp 😕
I am afraid I never discovered exactly what my TSH was, the private endocrinologist told me it was high enough to indicate my body was struggling to push my thyroid gland into working.
When your thyroid is sluggish, the only response your body can make is to increase the TSH ( thyroid stimulating hormone). That just goes higher and higher, to try and force the thyroid gland into working. I was feeling very much as you describe your symptoms, and becoming so tired I would fall asleep at every opportunity.
About five years ago, after being on thyroid treatment for fifteen years, these symptoms returned. I felt sure the thyroid treatment wasn’t working, but discovered my B12 was very low. Once my B12 was treated, my energy levels improved and many of my other symptoms disappeared. I have since discovered that if we have a thyroid problem we need our vitamin levels to be at optimum strength.
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
Ask GP to test thyroid antibodies and vitamins
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
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
£99 or £79 if on offer
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Come back with new post once you get results and ranges
Thank you so much for the info. I tested positive ( no range) for ANA antibodies last year but gp wrote it off and now I've tested negative for TPO antibodies but my Tg autoantibodies is 6.3 ug/l , I think the range is <0.9. But today GP has said it wasn't Tg antibodies that was 6.3 it was just Thyroglibulin so level is fine???
According to previous post ANA antibodies were elevated. Did you get a copy of results along with the lab ranges? Fist thing to do is get copies of all blood test results. Your ferritin is so low that your own thyroid hormone may not function very well. What about vitamin D? your problem may well be deficiencies that are affecting thyroid function rather than an underlying thyroid condition so ask GP to explore further with more blood tests. Write a list of symptoms to take with you.
I will request copies and will look Into deficiencies, thank you
Strength and Prayers for you . Keep Strong Positive and Focused . If your Dr does not want to treat you with all your symptoms it's time to switch to a Dr who listens to you and takes your symptoms seriously . Meantime you would want to supplement some nutrients that can be valuable for you . Vitamin "D"/K2 , B-Complex , B-12/folate , Iron if your low , Vitamin "C" magnesium , Celtic Sea Salt . Some of the nutrients will support your adrenals too .
Best Wishes for Your Well-being .
Thanks so much
My ferritin is 18 (10-204)
For things like vitamins and minerals (ferritin is a measure of your iron stores) you don't have to rely on doctors if you can afford to pay for private testing and can buy your own supplements.
medichecks.com/iron-tests/i...
healthunlocked.com/thyroidu...
A ferritin level like yours (which is only 4% of the way through the range) is likely to make anybody feel dreadful. Ideally it would be 50% of the way through the range, or slightly more i.e. 107 - 130 would be reasonable. Anyone who is supplementing iron needs to know more about their iron than just a ferritin level. It is important to know your serum iron level and transferrin saturation too. And it is important to test every couple of months to be sure people don't overdo their iron intake (which is poisonous in overdose). Neither ferritin nor serum iron should be allowed to go over optimal - see this link for more info on optimal iron :
rt3-adrenals.org/Iron_test_...
Good luck. 
Isn't it crazy how they make you question yourself just because they are supposed to know more and we r supposed to trust them 😕
Thank you, I've only been a member of this group for 2 days and I feel so supported already, I'm so glad i found it
You don't need my advice because you've already received enough to set you on the road to recovery.
Most of us understand how you feel so don't feel alone.
Your doctor clearly doesn't understand thyroid and is very unlikely to admit that.... not so unusual.
Read much, learn lots and be the knowledgeable one!
Ask questions, have a good moan or let off steam....anything thyroid related......this is the place to be and where the experts reside.
Don't consider giving up, you have already started on the road to recovery by posting here. I can vouch for that!
One caveat however....you must be determined and very patient because unfortunately there is no quick fix (think headache/paracetamol!)
Take good care
Best...
DD
Thank you that's really kind
As humanbean said you MUST have full iron panel test
Your ferritin is very low
Insist on full iron panel test for Anaemia
Vitamin D, folate and B12
Low vitamins are extremely common when hypothyroid
Plus get printed copies of all previous blood test results, see exactly what has been tested and importantly what hasn't been tested
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.
Come back with new post once you get results and ranges
Think I've had that , it all seems ok, well gp says no tests I've had are abnormal and nothing further to be done. Is iron panel, full blood count haemoglobin etc?
Not had vitamins though, thinking of doing online checks for that. I dislike confrontation 😔
Can you add full blood count results and ranges
Yes, many of us hate confrontation with medics. But a receptive GP should listen and consider requests
Getting online access to blood test results is easiest option, if it's available. Takes a few days to organise. You need to take photo ID in when you register
Improving ferritin with diet for month or so then consider full private testing of thyroid and vitamins
Come back with new post once you get results
Ok here it goes:
Basophils = 0.13 (0-0.4) Haematocrit = 0.41 (0.37-0.46)
Haemoglobin = 137 (120-155)
Lymphocytes = 2 (1-3.4)
Mean cell haem = 30.2 (28-33)
Mean cell vol = 90.7 (80-105)
Monocytes = 0.51 (0.2-0.8)
Neutrophils = 4.7 (1.7-6.2)
Platelets = 219 (140-400)
Red cells = 4.6 (3.9-5.1)
White cells = 7.4 ( 3.6-9.2)
humanbean is our iron expert, hopefully might add a comment
Everything is in range. So looks ok to me, but I don't really understand iron
Is iron panel, full blood count haemoglobin etc?
No, it isn't. Full Blood Count (FBC) and Iron Panel are two different groups of tests, although they do provide information that can give help with the interpretation of the other to a certain extent.
The results of the FBC you've given do look surprisingly good for someone with such appalling ferritin. The really obvious helpful result is that your haemoglobin is very good, and so you aren't suffering from Iron Deficiency Anaemia. But you can still suffer from Iron Deficiency without Anaemia.
One thing that makes interpreting an FBC complicated is that if iron and/or ferritin are low AND Vitamin B12 levels are low then for some parameters a low B12 pushes them high and a low iron/ferritin pushes them low or vice versa. If the patient has both low B12 and low iron then the results they get for some of the parts of the FBC can look absolutely normal. I haven't seen a B12 level amongst your results, so I can't comment on that.
The tests included in a full iron panel are usually 3 or 4 of the following :
1) Serum iron
2) TIBC (Total Iron Binding Capacity)
3) Transferrin
4) UIBC (Unsaturated Iron Binding Capacity) - this is rarely provided
5) % Transferrin Saturation
6) Ferritin
The absolutely essential ones (in my opinion) for determining whether people should supplement or not are 1, 5 and 6.
Some links on iron testing and FBC - for the labtestsonline links, click on each of the + signs for more info :
labtestsonline.org.uk/tests...
labtestsonline.org.uk/tests...
labtestsonline.org.uk/tests...
And for general info :
cmaj.ca/content/184/11/1247...
Thank you
Feel like giving up
Feel like giving up...constipation has come back :(
I am giving up!
Patronising Thyroid Dr feel like giving up trying to get answers.
