What else causes TSH to rise above range?

[sy28]

I'm searching for the 'something else' it might be that medics refer to, but bypass completing the detail. Do you know the answer? I am not 'fixated with thyroid', I just want to feel well. So far tests confirm diabetes has been ruled out. Consultant still insisting I reduce Levothyroxine until TSH reads over range twice @ 5.5 or 10, once. Reduced Levo by 50 mgm to date - now down to 100mgm and feeling symptomatic and low - so much so, holiday cut short by illness. Not a whinge, just debilitated by lack of empathy. I feel I'm being set up to fail.

[diogenes Remembering]

You say the consultant wants to reduce your dose so much that you show hypothyroid TSH results. Why, for goodness' sake? It's playing russian roulette to see if you are "really" hypothyroid instead of pretending to be. This attitude is frankly malignant and could lead to really serious consequences. You cannot be treated like a lab animal in this way just to do an experiment on. It is not ethical and you should say so. Remind the consultant, it is his/her duty to do no harm and this attitude goes right against that essential ethical behaviour that medicine should always adhere to.

[sy28 in reply to diogenes]

Thank you diogenes, I am in despair, frankly. In reducing dosage to 100mcgms, I am as symptomatic as I was in 2017. I had forgotten the worst aspect is feeling your well being plummet - though this time the physical symptoms have been even tougher. I cannot envisage reducing again to 75 mcgms and 50 mcgms in order prove a point. But those are the terms for me to qualify for a T3 trial. I agree with everything you say, it is unethical, more so when guidance on Specialist responsibilities is being ignored.

[SeasideSusie Remembering]

From reading one of your previous posts, your endo wants to "achieve either 2 x TSH results above 4.2 or 1 x TSH result above 10 in order to prove original diagnosis, to qualify for T3 trial". Why? Isn't your original diagnosis enough? Aren't your test results enough? And as Greygoose said in reply to your other thread, it's not TSH that tells him whether you need T3, it's the FT4 and FT3 results.

I'd run away from this endo very quickly.

[sy28 in reply to SeasideSusie]

Hi SeasideSusie, thanks for replying ... where do you run to? My GP confirms 'you have had a lot of consultant time.' I think it unlikely she will refer me a third time. The most crushing experience last week was GP's telephone call, during which she dismissed 09 November 2016 test result: Serum TSH 5.7 miu/L [0.35 - 5.5] as 'evidence'. More worrying still, was confirmation she would not prescribe Levothyroxine at that point either. Consultant's latest letter confirms goal posts have changed again - to make clear diagnosis of hypothyroidism she needs to see an elevated TSH again to be absolutely certain that the symptoms I am experiencing are related to the thyroid - yet at the same time refusing tests, as advised to specialists by June 2019 NHS England Guidance - Prescribing of Liothyronine|Regional Medicines Optmisation Committe (RMOC) "to ensure that all alternative causes of symptoms have been excluded."

Thanks again for your supportive comments.

[sy28 in reply to SeasideSusie]

Hi SeasideSusie, I confirm endo wants to "achieve either 2 x TSH results above 4.2 or 1 x TSH result above 10 in order to prove original diagnosis, to qualify for T3 trial" is correct - brain fog error in posting. Apologies.

[shaws Administrator]

I agree with both diogenes and SeasideSusie. This person isn't surely qualified to treat those with hypothyroidism. Maybe he's just read a book about it. The aim is a dose of levo, gradually increased until TSH is 1 - not somewhere in range as most seem to think. He is dicing with your health. I think I'd give this 'expert' a miss and search for another.

[MaisieGray]

Am echoing the previous responses. It's questionable which is greater - his ignorance or his psychopathic traits ......

[Teresamarie]

I’m so sorry 😐 to hear how poorly you are feeling. Hopefully the answers will come soon.

[shaws Administrator]

We build up our hopes once we get an appointment with an Endo. Yours just dashed your hopes by insisting you reduce your dose so that the TSH rises to over range twice @ 5.5 or 10. I think he may have a problem with his thyroid gland as it sounds ridiculous to adjust patient's levo dose to increase the TSH result when the aim is 1 or lower once prescribed levo.

[sy28 in reply to shaws]

Dear Shaws, thank you for both replies - I hate saying this, but unfortunately guidelines support the approach my endocrinologist is taking. I refer in particular to 'Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee' (2015) which states: 'In some cases, a retrospective review of the original diagnosis may be necessary.' This is the route my consultant insists on taking without examination, evidence of family history, genetic test results, consistent presence of autoimmune antibodies 10 February 2017 - 5 July 2019, any other endocrine tests apart from TSH, without ensuring all alternative causes of symptoms have been excluded, ignoring confirmation my symptoms of hypothyroidism persist despite optimal dosage with levothyroxine (TSH 0.4 - 1.5mU/L), suggesting I might actually feel better without thyroxine while acknowledging she now completely accepts I may have a more fulminant autoimmune hypothyroidism given the strongly positive antibodies. "I suspect accepting her symptoms and learning to manage them would be a better approach for her."

09 November 2016 Serum TSH 5.7 miu/L [0.35 - 5.5]. Primary Care records confirm I do not have coeliac disease or diabetes.

[ILR2019 in reply to sy28]

And has your endo explained in thorough detail why a review of the original diagnosis is necessary? If not, then they have no business reducing your medication, particularly as you are symptomatic. Their job is to treat you and your symptoms not make you symptomatic and ill in order to achieve what is effectively a second opinion. You may also want to refer back to those guidlines which also state that the aim of treatment is to stablise the TSH, nit increase it on a whim and without explanation.

[sy28 in reply to ILR2019]

The endocrinologist's initial diagnosis response acknowledges positive thyroid antibodies but 'this is not uncommon in the background population and TSH may normalise on repeat testing. Therefore a one-off, 10 February 2017, raised TSH of 5.1miu/L [0.2 - 5.5] might not indicate underlying hypothyroidism. However she was started on Levothyroxine before having a repeat.'

This statement is now incorrect and superceded by new test result evidence:

09 November 2016 Serum TSH level 5.7 miu/L [0.2 - 5.5]

Hypothyroid diagnosis was confirmed in March 2017 which is when Levothyroxine treatment started.

The above has been confirmed to endocrinologist who says she remains clear, to make the clear diagnosis of hypothyroidism we need to see an elevated TSH again.

[ILR2019 in reply to sy28]

Has she only tested TSH or have you had other tests done? If so can you include them here. Also, what was the results of your antibodies test?

[sy28 in reply to ILR2019]

Dear ILR2019 sorry it's taken me a while to respond ... TSH is the driving factor, I'm afraid.

However, 02 February 2007 Helicobactor pylori test positive.

02 July 2013 frozen shoulder

I understand both the above may be associated with hypothyroidism.

Previous 2018 -2019 tests rule out Diabetes, Coeliac, Addisons.

May 2019 @ 125mcgs Levothyroxine, Serum lipids levels Borderline.

History of presence of thyroid autoimmune antibodies:

10 February 2017 (NHS test result)

Serum thyroid peroxidase antibody concentration <20 kU/L [0 - 60] Patient unmedicated

that seems consistent with Medichecks results to date returning at <9.0kU/L (Range:<34)

09 February 2018

(NHS test result)

Thyroglobulin antibodies

>3,000 [0 - 20]

Patient medicated - 125mcg Levothyroxine

26 July 2018

(Medichecks test result)

Thyroglobulin antibodies

>1,275 kU/L [<115]

Patient medicated - 125mcgm Levothyroxine

14 November 2018

(Medichecks test result)

Thyroglobulin antibodies

>1,185 kU/L [<115]

Patient medicated - 150mcgm Levothyroxine

17 May 2019

(Medichecks test result)

Thyroglobulin antibodies

>1,354 kU/L [<115]

Patient medicated - 125mcgm Levothyroxine

05 July 2019

(Medichecks test result)

Thyroglobulin antibodies >1,115 kU/L [<115]

Patient medicated - 100mcgm Levothyroxine

I have been reducing Levothyroxine from 150mcgm - 100mcgm, very reluctantantly and cautiously, according to endo's instructions, since April 2019, monitoring TSH every 6 - 8 weeks.

Reducing to 100mcgms has made me really unwell - experiencing severe stomach cramps, upset stomach, hair loss, extreme fatigue, dry skin, disrupted sleep, reflux, muscle weakness and dizziness.

July Medichecks tests confirm Vitamin D is low despite being outdoors this summer. Ferritin, Folate, B12 levels are all within range.

It's become obvious illness would follow if I reduced Levothyroxine any further to 75mcgm, 50mcgms in order to prove a point by raising TSH above my local CCG 4.5 range. I seem to become noticeably symptomatic on reaching 1.06 - 1.38 [02 - 4.5]!

To complicate matters, having increased Levo back up to 125mcgms, my GP requested another TSH, so I reduced again to 100mcgms, the GP thinking TSH might really have risen, given the symptoms I have been experiencing.

15 August test result: Serum TSH 0.53mu//L [0.2 - 4.5].

My heart sank!

The way things are going neither GP or Endo will react or take me seriously with a result like that.

It's one thing to apply 2015 BTA Executive Committee guidelines:

"In some cases, a retrospective review of the original diagnosis of hypothyroidism may be necessary. Symptom and lifestyle management support should be provided and further dose adjustments may be required." - what I would like explaining is:

why is the following, crucial, preface being ignored:

"It is acknowledged that a proportion of individuals on L-T4 are not satisfied with therapy and have persistent symptoms despite a normal serum TSH. Such symptoms should be given due consideration and patients should be thoroughly evaluated for other potentially modifiable conditions."

Despite taking documented family history into account, genetic evidence; consistent presence of thyroid antibodies, November 2016 elevated TSH at 5.7 mu/L [0.35 - 5.5], 'persistent symptoms of hypothyroidism, despite adequate replacement using levothyroxine, evidenced biochemically by serum TSH being between 0.4 - 1.5mU/L' (RMOC June 2018, Version 2.6) ....

I am told the NHS cannot help me.

'It's cost.'

How can that uphold the

NHS Constitution principle that "everyone counts"?

It is crushing to experience first hand, the inequality of empathy and treatment options thyroid patients, as a community, appear to be experiencing. If you're not careful you're left with no oxygen.

[ILR2019 in reply to sy28]

Get a new GP and consultant. Your antibodies are off the scale and it looks as though you are undermedicated.

[sy28 in reply to ILR2019]

Thanks for your replies.

[Hillwoman in reply to sy28]

Why does your doctor want you to "accept" your symptoms instead of treating you correctly so that they abate? It's a rhetorical question; this approach is shared by so many in the profession, though it's ethically inexcusable.

[silverfox7]

Leave well alone! I would start another thread asking if anyone can recommend a good Endo in ---------- Up to you how specific you want to be. May be more replies if you state the area you are able/willing to travel to but stress by PM only as we don't discuss this openly. Once you have replies you can then ask questions via PM to get more in depth answers.

[sy28 in reply to silverfox7]

Thank you silverfox7. Will do, I appear to have been so unlucky with the two NHS (diabetic) endocrinologists I have seen - the current Specialist confirms she doubts the NHS can help me due to cost. I wonder if GP will support a third referral.

[silverfox7 in reply to sy28]

Technically though I thought the NHS should honour an Endo's advice if that's what they say you need.

[ILR2019 in reply to sy28]

Ask her to put that in writing! I bet my right arm she won't

[Angel_of_the_North]

You could try and get yourself some monoclonal mouse antibodies - those can make your TSH rise without lowering your thyroid hormones (they interfere with the assay). Sorry, not a serious suggestion. I would just dump this sadistic endo and find a decent one or buy your own T3

[shaws Administrator]

Oh! that we should have doctors who really are aware of how disabling undiagnosed hypo can be.

The pity is doctors who were trained prior to the introduction of levo/blood tests have now retired and it is a sort of 'painting by numbers' for the diagnosis/prescribing for hypothyroidism. i.e. since then.

The TSH must reach to 10 when we used to get a prescription on a trial basis going by symptoms alone. If doctors didn't retire some were struck off for not following the 'guidelines by their organisations'. We also used to be given 'options' if levo was not improving, i.e. NDT or T3 added to T4.

Their knowledge of clinical symptoms is nil. I can prove that as I was given this diagnosis another diagnosis (undergoing anaesthetic) and given 'treatment' and operation with not one even thinking of the commonest cause i.e. hypo. That's why I had to stagger on until TSH was 100 (diagnosed by myself) but fortunate to see Dr Peatfield and Dr Skinner through Thyroiduk afterwards.

Like most, I have lost my faith completely in the medical professionals as they seem to only refer to 'numbers' whilst ignoring severe clinical symptoms of patients and know none at all. They are fixated on the TSH which is not a thyroid hormone (it is from the pituitary gland) - they never test (or rarely test) FT4 and FT3. They give extra prescriptions for the disabling symptom(s) and still we feel unwell because it is hormones we lack - ones that drive our whole body from head to to. diogenes is perfectly correct but the problem is that doctors and endocrinologists don't treat the patient but only refer to a blood test alone.