Clueless!

[lesleyjehan]

My daughter has been struggling for around 20 years, since her teens in fact! Finally, she saw her ENT consultant on Tuesday. He’s repeatedly told her she’s not hypothyroid but she has a goitre and needs half her thyroid removing. That was before the virus this week he was still saying she wasn’t hypothyroid until she asked him to look at her lower legs, feet and arms. (Her gp had said she had Guttate Psoriasis.) When he saw her legs he straight away said she DID have hypothyroidism. Long and short she now has to see an Endocrinologist and is holding back on the op until she’s seen the Endo. She managed to get a couple of blood test results from him but I don’t understand them at all so I was hoping if someone could advise us about the results she has? Just in case you can:

My daughter (43,) has been struggling for around 20 years, since her teens in fact! Finally, she saw her ENT consultant on Tuesday. He’s repeatedly told her she’s not hypothyroid but she has a large goitre and needs half her thyroid removing. That was before the virus then this week he was still saying she wasn’t hypothyroid until she asked him to look at her lower legs, feet and arms. (Her gp had said she had Guttate Psoriasis.) When he saw her legs he straight away said she DID have hypothyroidism. Long and short she now has to see an Endocrinologist she managed to get some results from him which I’ll post below. TIA.

In Dec her T4 - 11.9, T3 - 4.8 but her TSH was high... she thinks he didn't write it down as as he realised he should have referred her back then! Her TSH was 6.0 but I’m not sure when that was.

Can anyone advise us on these results, please.

[SeasideSusie Remembering]

lesleyjehan

Do you have the reference ranges for the test results (on a print out they will be by the side of the result, possibly in brackets)? Particularly the FT4 result, we really need to know if that is below range or low in range.

[lesleyjehan in reply to SeasideSusie]

For ease I’ve copied my reply to another kind person, I hope you don’t mind.

Sorry to take so long getting back to you. She has asked so many times for print outs of her blood tests but never actually received any! She wrote down the few I posted as she remembered them after her appointment. The lump on her neck is quite large and keeps interfering With her breathing, eating and movement. Her consultant was still saying she wasn’t hypothyroid before the lockdown even though her TSH was in his words ‘high’ back in December. She had several clusters of cysts in her lungs, her groin and I think under her arms. The rash was horrific at its worst. It was like the Kawasaki rash but that’s usually only in children. In the past she’s been diagnosed by blood tests with Lupus, Reynauds, Rheumatoid Arthritis and so many other things then she’ll see another dr who says she no longer has those things!? We’ll do our best to get the results but it may take some time. She’s the 4th generation in our family to have hypothyroid and she told the consultant that when she first saw him and several times since. Thank you so much for answering my question.

[lesleyjehan in reply to SeasideSusie]

Sorry, for some reason your reply went to my spam which I never usually look at! She’s asked and asked for blood test results but they’ve never materialised. I’ve told her to put her request in writing which they then can’t say they haven’t received. Thank you for replying

[DippyDame]

Your daughter is entitled to ask for lab results.

Request any thyroid labs on record and post them here - ranges in brackets must be included

These will give members the info required to help.

[lesleyjehan in reply to DippyDame]

For ease I’ve copied my answer to another kind person I hope you don’t mind.

Sorry to take so long getting back to you. She has asked so many times for print outs of her blood tests but never actually received any! She wrote down the few I posted as she remembered them after her appointment. The lump on her neck is quite large and keeps interfering With her breathing, eating and movement. Her consultant was still saying she wasn’t hypothyroid before the lockdown even though her TSH was in his words ‘high’ back in December. She had several clusters of cysts in her lungs, her groin and I think under her arms. The rash was horrific at its worst. It was like the Kawasaki rash but that’s usually only in children. In the past she’s been diagnosed by blood tests with Lupus, Reynauds, Rheumatoid Arthritis and so many other things then she’ll see another dr who says she no longer has those things!? We’ll do our best to get the results but it may take some time. She’s the 4th generation in our family to have hypothyroid and she told the consultant that when she first saw him and several times since. Thank you so much for answering my question.

[DippyDame in reply to lesleyjehan]

Perhaps your best answer is to point out to your surgery that you are legally entitled to ask for medical records and lab results. Hidden has explained this in her reply above.

Is it possible for her to see another GP in the practice...someone with an open mind!

it sounds as if those she has visited already are clueless. If the GP considered her TSH "high" he should have investigated... if you don't look for problems you won't find them!

bmcendocrdisord.biomedcentr...

The first author here is a TUK advisor, they discuss TSH and it's place in thyroid diagnoses.

This might help

thyroiduk.org/getting-a-dia...

Have you considered private testing thousands of members choose this way forward

thyroiduk.org/getting-a-dia...

I think the time has come to be pro-active, not always easy but important if someone's health is being compromised.

Once your daughter obtains a set of results post them here and you will receive excellent advice. I can vouch for that...this forum helped me find answers that had eluded me for decades.

Best...

DD

[lesleyjehan in reply to DippyDame]

Thank you so much for your advice. Although her GP’s from 2 unrelated surgery’s have told her she isn’t Hypothyroid these last few times it’s been her consultant! The results I put on here were given verbally by her consultant this week. She is really struggling with full time work Getting up is a major issue for her presently. The fights just gone out of her. She’s said she will ask again for her results. I’m very limited in what I can do as I’m severely disabled and still in lockdown. As soon as she gets anything I’ll post it here. Once again thank you

[lesleyjehan]

Sorry to take so long getting back to you. She has asked so many times for print outs of her blood tests but never actually received any! She wrote down the few I posted as she remembered them after her appointment. The lump on her neck is quite large and keeps interfering With her breathing, eating and movement. Her consultant was still saying she wasn’t hypothyroid before the lockdown even though her TSH was in his words ‘high’ back in December. She had several clusters of cysts in her lungs, her groin and I think under her arms. The rash was horrific at its worst. It was like the Kawasaki rash but that’s usually only in children. In the past she’s been diagnosed by blood tests with Lupus, Reynauds, Rheumatoid Arthritis and so many other things then she’ll see another dr who says she no longer has those things!? We’ll do our best to get the results but it may take some time. She’s the 4th generation in our family to have hypothyroid and she told the consultant that when she first saw him and several times since. Thank you so much for answering my question.

[shaws in reply to lesleyjehan]

I'm sorry to state that the majority of GPs really don't know much about dysfunctions of the thyroid gland. They seem to only look at a TSH result (TSH = Thyroid stimulating hormone which rises if the thyroid gland is struggling). Unfortunately in the UK they've been instructed not to diagnose until TSH reaches 10 but I've no faith in the professionals as I had to diagnose myself, despite a very high TSH.

Before blood tests were introduced for diagnosing patients with a dysfunctional thyroid gland, the medical professionals were trained in diagnosing by clinical symptoms alone. They have lost those skills they had previously regarding diagnosing symptoms of a dysfunctional thyroid gland due to relying upon the TSH alone . Previously they were taught all of the clinical symptoms and patients were given NDT (natural dessicated thyroid hormones) on a trial basis and if they felt an improvement and sympoms began to resolve, they were diagnosed as hypo and dose increased slowly until they felt much better and symptom relief.

Nowadays they (if they take a TSH blood test (i.e. thyroid stimulating hormone) in the UK they've been instructed not to diagnose until TSH is 10 which is really ridiculous and people could be very symptomatic and need thyroid hormone replacements - Levothyroxine is the usual one dispensed in the UK.

For blood tests for thyroid hormones the appointment should be at the very earliest, fasting (you can drink water) and when diagnosed and taking thyroid hormones a 24 hour gap between the last dose and the test should be the aim and take it afterwards.

[lesleyjehan in reply to shaws]

Thank you so much. So is a TSH of 6 not very high? Thank you for the advice on what she should do before blood tests. I’m hypo too but had no idea a fasting blood test was needed although I’d been told by someone once that I should miss my tablet before the blood test. I’m also on Liothyronine would you mind advising me as to whether or not I should miss that one out too please. TIA

[shaws in reply to lesleyjehan]

For us who are hypothyroid, need our TSH to be 1 or lower.

A TSH of 6 is climbing and, in the past doctors would have diagnosed us upon our clinical symptoms alone (no blood tests then) and prescribed NDT (natural dessicated thyroid hormones) but, in these 'modern' time they have been instructed not to diagnose us until it is 10, ignoring any clinical symptoms we may have.

When having blood tests for your thyroid hormones this is the procedure to follow:-

Get the earliest possible appointment.

It has to be a fasting test but you can drink water.

Allow a gap of 24 hours between your last dose and the test of hormones (if taking any) and take it afterwards.

This should give you the optimum results.

Put your results, with the ranges, on a new post for comments.

Once upon a time, before blood tests were introduced, we were all diagnosed upon our clinical symptoms alone. Nowadays the professionals only look at the TSH result and rarely test for the Free T4 and Free T3. The latter two give more information than an T4 or T3 test.

thyroiduk.org/getting-a-dia...

[lesleyjehan in reply to shaws]

Thank you so much for your advice

[shaws in reply to lesleyjehan]

If taking levo and lio (T4/T3) you miss both and take them after blood test which is always the earliest blood test. Even if you have to make an appointment weeks ahead.

[lesleyjehan]

Thank you so much for your advice. I hope your issues are resolved soon.

[humanbean]

Your daughter needs to write a Subject Access Request (SAR). Theoretically they can be done verbally, but many surgeries refuse or ignore such requests or pretend they never happened, which is actually illegal.

For info on how to write an SAR see this link from the Information Commissioner's Office :

ico.org.uk/your-data-matter...

Always make sure you keep copies of any correspondence and always note the date that such correspondence was sent or received by you. Make sure you stick to the point. You don't have to give reasons for making an SAR (and in fact you shouldn't make any attempt to explain yourself).

Another point - hand the SAR to a receptionist (or in these days of Covid-19 put the letter in the surgery letterbox), noting in each case, on both letter and envelope, that it was delivered by hand. Another possibility is to use Recorded or Registered Delivery which would require the letter to be taken to the Post Office. Make sure to get a certificate of posting.

There is no need to see a doctor to get hold of copies of medical records.

[lesleyjehan in reply to humanbean]

Thank you so much. She’s really, really exhausted at the moment.mi think her consultant saying he thought she was hypothyroid has relieved her so much that she’s just let go. Hopefully though she will get onto it soon.