My daughter (aged 44 years) has asked and asked for her blood results and on Monday her ENT consultant rang and told her the following for whatever reason they will NOT send/email her the results. We’re thinking that maybe they were showing she needed medication for her thyroid problem. The Endo consultant has said she won’t see my daughter as there’s nothing she could do for her. The only results so far are as follows:
On the 16th June her Free T4 was normal at 11. In December it was 11.9
TSH has also fluctuated it was 5.6 in June but 6 in December
There has been a noticeable decline in the Free T4, T3
T3 is 5 was 4.8 in December
She’s been told she is TPO positive
She is feeling so poorly and hasn’t the energy to cope with anything at the moment.
She is on her umpteenth round of Shingles which started on Friday.
Other diagnosed illnesses:
Goiter (due for removal soon)
IBS
Reynauds
Fibromyalgia
Gutate Psoriasis (looks like Kawasaki rash)
Vitamin D deficient (tablets for life)
Leaky gut
Silent reflux
Hashimoto’s has been mentioned
Enlarged lymph node in right lung
Cysts all over the place
Swollen ankles and feet
The following have been diagnosed 1-2 times and then been told she doesn’t have them anymore:
Rheumatoid Arthritis
Lupus
She received a call from her ENT Consultant saying that she was now Hypothyroid and he was writing to her GP to advise them that she was to be prescribed 75mg Levothyroxine. On speaking to her GP she was told that they would NOT prescribe her Levothyroxine but they would retest her levels and then decide what to do when they received the results.
Can they ignore the Consultant like this? I advised her to ring her ENT Consultant to tell him what the GP has said.
That’s as far as we’ve got.
I’m so sorry that this is such a long post. Although I’m Hypothyroid myself I can’t retain anything and am at a loss as to what she should do and she’s so poorly with the Shingles again and on top of everything else. TIA
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lesleyjehan
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Why is she having her goitre removed? I have had a goitre for about 12 years and the first thing my Endocrinologist said was to have it removed and take levothyroxine. I am so glad I kept mine and I have no intention of having it removed unless it is cancer or it is very big. Mine is a multi-nodular goitre and it sometimes swells slightly but having seen how other women have struggled to get proper treatment after removal I am keeping mine.
She’s having it removed as it’s interfering with her breathing and swallowing is difficult. She was also diagnosed with cysts in her left lung at the same time 😊
When I was first diagnosed I experienced similar symptoms because I was untreated for 2 years. I personally would get a second opinion because you might find her symptoms improve once she is getting Levothyroxine. I am not medically trained but I have seen on many sites here and in the US how women who have had their thyroid removed have struggled to get the proper treatment.
A lot of GP's do not know anything about thyroid disease I'm afraid. Mine admitted to me he didn't and that he had to stick to NHS guidelines when it came to blood results.
Wow that is discusting from your GP and endo. No wonder you’re at a loss. All I can say is keep fighting and speak to other doctors. Hopefully you will find a good one willing to help. Plus the CANNOT refuse to give her her results!!! I’m sure someone with more knowledge will be along soon to advise. Xxx
She is entitled to see all her results and medical records it is the law. I have just applied to see mine from 10 years ago when I was treated by a rubbish Endocrinologist. He offered me counseling for feeling ill so I walked out of his clinic. Having worked for the NHS in the past I wonder if my records will not be found or are lost. I will have to wait and see what develops.
Just a thought but check if the Endocrinologist specializes in Diabetes? If that is the case you need to change to one who knows about thyroid disease.
Thank you.😊 She’s asked and asked for copies of her blood results and all she’s got are the verbal ones which are posted above. The Endo refused to see her so she is still under ENT.
Yes, we will keep trying to get them. One reason we thought might be that her results have been showing that she IS Hypothyroid for some time and they’ve just ignored it? Thank you😊
She just sent an email saying that there was nothing she could do for her. Full stop. End of. My daughter has asked to be referred to an Endo who will see her.
Appalling! Keep on pursing it. Endos can be pretty foul... arrogant [aka ignorant] and so out of touch with hypothyroidism. Doctors knew things way back, now it's all bloods and half-wits unable to tell sh*t from clay. I'm so sorry that your daughter is going through this. xox
We’ve no idea why she refused to see her. The list of AI diseases in my family is quite long so I would have thought the Endo would have jumped at the chance to go deeper but no such luck😢
Yes, there was quite a few AI issues within my family too and there's a clear path within my extended family to highlight it but no one wanted to know. A little 'history': I so feel for both of you + know where this can go. Do whatever it takes. xox
Being ill for almost 4 yrs, just 0.11 below their 'little TSH range' yet with so many signs/symptoms (photos show huge differences!), I was either ignored or told NOT hypothyroid by two endos (2008/09). Actually, it was Dr Chris on 'This Morning' who 'diagnosed' me: getting up - sitting slumped/ill - going to bed (I'd been really active, bit of a livewire and now have CFS too - also ignored). Then, finally diagnosed Feb 2010 by Dr S who properly [via exam, medical history and taking bloods into account] - worked with GP - trialled me on Levo: I obviously had enough T4 and became 'toxic' within weeks of taking it.
After five+ years of largely taking imported Armour Thyroid, also prescribed by GP and was NHS funded, where I had also been advised that I really needed to take T3 alone. I went to see Dr P [May 2010] to seek advice on which supplements [taking to try to 'fix myself'] in an attempt to slowly stop them: he added two more to my list. He couldn't believe that I hadn't been diagnosed, saying "Armour isn't enough for you, need T3 for life" and told me of the great source from which to purchase.
June 2015, I was UN_diagnosed by a dreadful endo I'd asked to see due to newly emerging symptoms - someone 'promoting' himself as seeing 'outliers to their system': I had freezing shins and was 'punch drunk'/stumbling for a couple+ hours on waking, [I used to have a temp of 34.5C and a heart rate of 39 bpm waking me up of out my sleep until Armour, then T3], so it was ludicrous to un_diagnose a clearly hypothyroid patient. Worse than that he did a Beta Crosslaps test to try to show me that T3 was harming me - this test wasn't done within stated protocol - and, in anticipation of his sneakery - I'd asked for a Dexa Scan to check my bones = FINE. I'd clearly stolen his thunder because he failed to inform me that I was at a very high [bloods] level of some dreadful bone problems. I had to prize this result out of GPs hand a year later... and basically had to 'live with' the potential that there could be fatal bone problems because endo wouldn't retest and GP's can't ask for that test.
As it happens I do now have spinal issues, unlikley due to T3 but down to medical connivery and years of neglect, (on top of the additional problems outlined above). From 2013 going to GP with Right Shin pain, being sent on wild goose chases, including bloods for DVT (a throwaway comment re my long haul flights - no worry about it!), it was leg pain for a long while. Also told I had a 'short leg' [I don't], whereby twice in 2017 [May & Nov] a consultant finally pointed out where the shin pain was likely to be coming from in my spine: he was ignored out of hand - a much longer and ongoing story!
'Good' doctors are generally hounded out of existence by the other sort, so be strong and find someone to you assist with this. Take care in your dealings; again, best to you and your daughter.
WOW! They certainly put you through it! I myself have had quite a journey and I don’t understand any of it as I can’t retain anything. I have spinal issues caused, I think, by a horse falling on me as a teenager, but the pain didn’t hit until late ‘90’s. I was diagnosed with hypothyroid around 2004 and put on Levothyroxine and am now also on Liothyronine. I have many AI diseases and drs are very dismissive of the Other drs who’ve diagnosed me. I was told there was a shadow on my left leg and I’d need it scanned every year. That hasn’t happened. I have Sacroiliitis, my right hip is ‘mush’ in the Consultants words. Sjogrens, my uncle has it and I think my gran and father would have had it had too had they been to the dr. My brother had hypothyroid too. I have Diabetes type 2, I’m on insulin. My meds have caused NASH Cirrhosis and an enlarged spleen, Lymphadenopathy. Most of my family had diabetes on both sides and many lost limbs due to it. I can’t even remember what else I have. My daughter’s pretty much going the same and my youngest daughter is too. I’ve run out of steam now!! Thank you for telling me about yourself, it’s been much appreciated👍
WoW, that's horrendous, so sorry for all you've all gone/are going through; yeah, my family have, one way or another, been seen off by 'them'. I just wanted you to know - if you didn't - HOW FAR endos will go. For Goodness Sake - WTF are they doing with your family!? People who've never experienced this simply don't get it - we get a double whammy from them too - 'Drs wouldn't do that', 'No smoke without...' but then they scream from the rooftops when ANYthing happens to them. TAKE CARE, all of you - keep at it. 🌹💥
I've asked on here for someone who would be willing to collate our experiences with endos/GPs re hypothyroidism + brief additional issues... so tired of 'them' picking us off individually. Dr S had a Hypothyroidism World Register... he was effectively 'seen off' too. There are some great people on here... I'd do it myself but not really able to right now, PLEASE someone offer to collate our experiences, obviously a limited # of sheets/words. So sorry that I can't precis any longer!
If TSH is above range, high TPO antibodies and symptoms ...levothyroxine treatment should be started
For full Thyroid evaluation you and your daughter 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 B12, folate and ferritin levels NOW
Starting on levothyroxine may reduce her goitre in size
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you but don’t hold your breath, they won’t do tests just because she’s asked for them. They seem to delight in making her life a misery.
I would simplify things down.
1. Your daughter needs the blood results and she has the right to receive them. Email the consultant simply stating you expect to receive the results by post or email as this is your right under NHS rules. Failure to comply with this will result in a complaint to the hospital, your MP and the Health Trust responsible. If they argue simply repeat the first letter / email and second refusal means a complaint follows.
2. Ditto GP surgery. A letter to the GP, copied to the Practice Manager stating the Consultant has recommended xxx treatment. Why has this been refused? If this refusal to treat results in a deterioration in health further action will follow. If your daughter is feeling generous she could say she only wants to work with the GP to restore her health/ improve her health.
Refusal or failure to take action results in complaints as above.
I’ve found putting things concisely in writing usually get results.
I totally agree with this. Everything needs to be in writing, it's a nuisance but emails are easy. You may need the info further down the line for a complaint. I started putting everything in writing adding that the letter was to go on my medical records, it helped focus the Dr. It was also invaluable as evidence when I made a formal complaint. As I insisted all correspondence was to go on my records they couldn't deny having received and had to explain why they decided to take no action in the face of my fast deteriorating health. However winning a complaint doesn't actually mean getting better treatment, you have to change Dr for that. It really isn't worth fighting a useless Dr, many know absolutely nothing and are frankly dangerous in view. Find a better GP I wish I had sooner as my Dr wasted 5 years of my life in dreadful pain and suffering. X
When I complain I always send the letter by guaranteed next day delivery that needs to be signed for - that way you can keep the receipt you are given as proof in case they try to say they haven’t received your letter. Worth the extra cost.
I agree with Hidden that your daughter is being treated abysmally - but which battle do you fight? (or fight first?) As JAmanda says, the endo can give the initial prescription - and it will be worth her getting that - and quickly - if she is now hypo, so that she can start to get better.
As Lora7again says, she is legally entitled to her blood results, but I'd say they are currently a lower priority than getting the meds she needs. My endo never sends me any bloods I have taken under him - I have to get the GP to ask for them and she then sends them on ... and if the GP is planning to take bloods anyway, it would be quite easy to ask for those - and the previous set under the endo - when you get the GP blood tests taken.
And ideally, get the whole lot of tests you need at the GP - ie TSH, free T4, free T3, thyroid antibodies, ferritin, folate, vit D and B12. Many are reluctant to do them, but I have had success in saying that they are the tests recommended by Thyroid UK.
The fact that you are hypothyroid should say something, im suprised they havent offered treatment, instead fob you off with fibromayalga and whatever else, im same age as your daughter, have 2 sisters and we all have hashimotis along with my mum, her mum and sister, absolutely disgusting, poor thing suffering, i would see another gp, maybe even another practice, and her endo could have given her script, i know they can in Australia not sure where you are though.
My Grandma, I think, was undiagnosed Hypothyroid. My dad and my brother had it i have it and I think both my daughters and 1 son may have it. Both my daughters have been diagnosed with Fibromyalgia and 1 son possibly with Heamachromatosis. Hashi’s has been mentioned for my daughter who was diagnosed with Hypothyroid. Thank you😊
told her the following for whatever reason they will NOT send/email her the results.
They are breaking the law. Check out the information on ThyroidUK's mainwebsite, she can make a Subject Access Request and they must provide the information within 30 days:
On the 16th June her Free T4 was normal at 11. In December it was 11.9
TSH has also fluctuated it was 5.6 in June but 6 in December
There has been a noticeable decline in the Free T4, T3
T3 is 5 was 4.8 in December
The differences in those results are negligible, nothing is static. But what is "normal" - that just means within range but we have to know what the range is. If the range for FT4 starts at 11 then her FT4 results are within range but at the very, very bottom.
She’s been told she is TPO positive
Then she has autoimmune thyroid disease (known to patients as Hashimoto's). If her TSH is over range then she should be started on Levo. See article by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, who clearly states this in an article he wrote for Pulse magazine (the magazine for doctors):
Question 2:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in two or three months in case the abormality represents a resolving thyroiditisis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to be come worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Oh, I forgot to add - it is worth specifying how you want your data given to you. I didn't specify and got everything on paper, which is fine if there are only a couple of sheets, but not helpful if there is a lot of information. I would have much preferred a USB stick or a CD.
Keep a copy of the letter you send and send it as recorded or registered mail. Make sure to get a proof of posting.
Look up the address of the medical records department on the hospital's website to make sure you send the letter to the right department within the hospital.
Hi. Has she tried getting acyclovir for the shingles from her gp. It’s an antiviral and if started early can reduce the duration of the episode. Hope you get a resolution soon. X
Thank you but I think she’s had it so many times when she was with a good GP that she knows what’s what with shingles but the Hypothyroid is new to her and she just doesn’t have the energy when she finishes work. Hence me asking for her!😊
Hi, clueless here, I’m sorry I’ve been out of touch but there’s been quite a lot going on and I just want to crawl under a stone and stay there...forever.
My daughter has been started on Levothyroxine 75mcgs. Her leg swellings have already started to go down and she feels like life’s improving even though she’s only been on it for 2 weeks. So everything’s crossed for her. The lump on the side of her neck is getting bigger/more noticeable and it’s uncomfortable for the most part.
I had my bloods done on July 25th and have just received a copy of the results. It says they require no action but there’s about 6 things which are below average and 2-3 which are higher than they should be. I don’t understand them at all so I’ve taken a pic of them (5 sheets,) but I’m not sure if I just whack them on here or what do I do with them because I would appreciate someone’s opinion who knows what’s what? Sorry to be a pain and TIA😬
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More of a rant than a post. Sorry!
Saw the Endo yesterday...
Update on medicheck results
Hi
