Feeling lost and hopeless : Just been to my GP... - Thyroid UK

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Feeling lost and hopeless

Craigmhor39 profile image
23 Replies

Just been to my GP and left in tears and don’t know where to turn!

I’m hypothyroid have been diagnosed 16 years currently on 225 levo daily. In all this time I have never felt better! Went to Gp explained my symptoms main ones listed below

Chronic fatigue

Forgetfulness

Insomnia

Lack of bladder control

Irregular menstrual cycle

Complete lack of libido

Mood swings

Anxiety

Lacking motivation

Extreme sweating especially facial which can be very embarrassing

Severe night sweats

Extremely emotional when this is never usually the case.

GP practice have not checked my levels since November 2017 and did not feel a need to do so. I have had private bloods done using Medichecks. Happy to post latest results if anyone can offer advice?

I thought I may be peri-menopausal she said I am too young.

Her advice I am over medicated and should reduce from 225 down to 150 daily as my symptoms suggest I may be over medicated.

Can anyone advise me what to do next? I feel so alone with this and can’t understand what is happening to me and am really struggling to cope.

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Craigmhor39
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23 Replies

Haven't read whole post through properly yet, but as far as I'm aware you cannot suddenly drop Levothyroxine by 75 mcg !

See another GP urgent or speak to practice manager. Ask for an urgent referal to an Endocrinologist.

You are well overdue your annual TFTS check but with symptoms ( I would hope) you should be investigated. GP would probably only be allowed to have TSH tested anyway.

Ask for full testing or referal or both.

How are your nutrients levels? Has GP ever tested?

What do you think is causing your symptoms?

What results do you have - could you post them with ranges and dates and your Nov 2017 if you have them.

ps

Just reading again and don't understand symptoms lIst as you also say that you ' . . have never felt better . . "

What were your symptoms before!

Craigmhor39 profile image
Craigmhor39 in reply to Mary-intussuception

Sorry I feel I could have written that better. Since diagnosis and being treated I have never felt an improvement in how I felt since taking the medication symptoms remain the same as they were before diagnosis and some are worse.

Mary-intussuception profile image
Mary-intussuception in reply to Craigmhor39

You need to see an Endocrinologist and have FreeT3 tested.

Is there any point in taking so much Levothyroxine if it's not helping - could you be a poor converter ??

If you would just add in your Medichecks results then people can make informed comment.

Judithdalston profile image
Judithdalston

Post your Medichecks ( and any other) results Craigmhor...you’ll get a good range of advice from forum members based on personal experience here! Was it this Gp that put you on the 225 mcg levo daily? You had folate, ferritin, B12 and vit D tested or know if you have Hashimoto’s antibodies?

Craigmhor39 profile image
Craigmhor39 in reply to Judithdalston

No the Gp who diagnosed me has since retired this is the first time I’ve seen this one.

SeasideSusie profile image
SeasideSusieRemembering

should reduce from 225 down to 150

Absolutely not, sheer madness. Dose changes should be 25mcg only.

NICE Clinical Knowledge Summary - Management of overt hypothyroidism:

cks.nice.org.uk/hypothyroid...

Management of persistent symptoms

•The recommendation on management of people who have persistent symptoms despite being treated with LT4 and with TSH levels within the reference range are based on the clinical guidelines The use of L-T4 + L-T3 in the treatment of hypothyroidism [Wiersinga et al, 2012] and Guidelines for the treatment of hypothyroidism [Jonklaas et al, 2014], the statements from the Royal College of Physicians The diagnosis and management of primary hypothyroidism [Royal College of Physicians, 2011] and the British Thyroid Association Management of primary hypothyroidism [Okosieme, 2015], and expert opinion in a review article [So et al, 2012].◦People taking appropriate LT4 treatment (TFTs within the reference range) who remain symptomatic should be further assessed to identify the cause — referral to secondary care may be required [Royal College of Physicians, 2011].

cks.nice.org.uk/hypothyroid...

◦Once a stable TSH is achieved, TSH can be checked 4–6 monthly and then annually.

British Thyroid Association Thyroid Function Test guidelines:

btf-thyroid.org/images/docu...

Once thyroxine replacement is initiated, for whatever indication, then long-term follow-up with at least an annual measurement of serum TSH is required to check compliance and dosage and take account of variations in dosage requirement caused by concomitant drug treatment (III,B)

Maybe see a different doctor.

Post your results so we can comment and maybe help further.

Craigmhor39 profile image
Craigmhor39

Thyroid stimulating hormone 0.139 range 0.27-4.20

Free thyroxine 19.600 range 12.00-22.00

Free T3 4.44 range 3.10-6.80

Thyroglobulin antibody 11.700 range 0.00-115.00

Thyroid peroxidase antibodies 37.7 range 0.00-34.00

Active B12 >300 range 37.50-188.00

Folate (serum) 9.5 range 3.89-26.80

Test results received 8/10/18

Nanaedake profile image
Nanaedake in reply to Craigmhor39

Thyroid stimulating hormone 0.139 range 0.27-4.20

Free thyroxine 19.600 range 12.00-22.00

Free T3 4.44 range 3.10-6.80

You are not overmedicated with these results. You can see that FT4 is safely in range and FT3 is also safely in range. However, you need more recent tests to find out what is happening. As you have autoimmune thyoid disease, results can fluctuate a little.

Unless you are very large or have had a total thyroidectomy then 225mcg of levothyroxine is quite a large dose although at the moment you clearly need it. It's very possible that you have an absorption problem caused by either coeliac disease, or gluten intollerance. Have you had these conditions ruled out?

Your active B12 is over-range, are you supplementing? If not, then a cause needs to be considered.

You have over range TPO antibodies which confirms autoimmune thyroid disease so it's very possible you have another coexisting autoimmune disease that could be causing absorption problems. Do you take other medication as some can also prevent good absorption of levvothyroxine.

You have no vitamin D test which is likely to be low with thyroid disease. Please return to a different GP in the practice, ask for vitamin D to be tested, ask for NHS B12 test to confirm it is over range if you are not supplementing and ask GP to find out the reasons, ask for test for coeliac disease although blood tests alone cannot rule it out. You also need ferritin testing as low ferritin or iron levels can cause some of the symptoms you describe.

Judithdalston profile image
Judithdalston in reply to Craigmhor39

Your bloods don’t indicate over treatment with levothyroxin.You could do with ferritin, and vit D results; in Oct.’18 your folate was lowish( should be at least halfway thru range) which may indicate you are not absorbing nutrients from food or supplements( a characteristic of Hashimoto’s). You need all 4 at optimum, not just in range( see Seasidesusie’s advice on supplements). You may need to add some T3 to get your FT3 raised to improve how you feel

Craigmhor39 profile image
Craigmhor39

Full Blood Count 10/09/19

Red cells

Haemoglobin 147 range 120.00-160.00

HCT 0.432 range 0.35-0.47

Red cell count 4.71 range 3.80-5.80

prussianblue profile image
prussianblue

Hi, sorry GP has upset you, clot. do you have any previous results from before the increase to 225mcg? How old are you? Or do you have any results from when you felt better?

Craigmhor39 profile image
Craigmhor39 in reply to prussianblue

No I don’t have any results from before I’m 44 and have never felt well since being diagnosed

DippyDame profile image
DippyDame in reply to Craigmhor39

It would help a lot if you could get a copy of your original diagnostic test results and post them here, you are legally entitled to ask for them. Sometimes problems are overlooked at that stage.....that happened to me and has only been discovered 20 years later!!

I never did well on T4 only and needed to add T3 (now T3-only) but before considering this you need to post test results here for advice and also ensure your vitB12, Vit D, folate and Ferritin levels are optimal.

You may not be adequately converting T4 to T3 and the unconverted T4 might be making you unwell.

Reducing from 225mcg to 150mcg is too big a drop at one time..

My guess is that you may need T3.

prussianblue profile image
prussianblue

Have you ever taken a higher dose? Is there a different GP you could see? Symptoms of perimenopause can occur if hypo, but without knowing where in the range you like fT3 and fT4 to be for you to feel well, it’s difficult to know.

Did you take your meds on the day of your test (before the test)?

I think most people would suggest that you’re overtreated, but I’m not so sure, tsh can be very unreliable and if so you could be undertreated with space at top of T3 and T4 ranges. If it was me I’d increase slightly, and if I felt worse I’d know that was wrong and then reduce to 200mcg. However this is not advice for you to do this, as I’m not medically qualified. . Good luck, I hope you get a helpful answer.

greygoose profile image
greygoose in reply to prussianblue

I don't think anybody would suggest she's over-treated.

SlowDragon profile image
SlowDragonAdministrator

Your results do not show over medication

Your TSH is low (which is all GP is looking at)

FT4 is fine

FT3 is too low

I think it's time to see a T3 friendly endocrinologist and get small dose of T3 added on private prescription or perhaps, with luck on NHS prescription

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft (who is now private consultant in Edinburgh) said in recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Eating liver or liver pate once a week should help improve ferritin levels

Are you on strictly gluten free diet?

If not get Coeliac blood test online under £20

Then assuming result is negative you can immediately start trying it

Craigmhor39 profile image
Craigmhor39 in reply to SlowDragon

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Craigmhor39

You are legally entitled to printed copies of your blood test results and ranges.

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. This is best option as you can see results back over long period of time

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.

Craigmhor39 profile image
Craigmhor39

Thyroid function

Thyroid stimulating hormone 0.139 range 0.27-4.20

Free Thyroxine 19.600 range 12.00-22.00

Free T3 4.44 range 3.10-6.80

Thyroglobulin antibody 11.700 range 0.00-115.00

Thyroid peroxidase antibodies 37.7 range 0.00-34.00

Haematology

Active B12 >300 range 37.50-188.00

Folate (serum) 9.5 range 3.89-26.80

Biochemistry

Inflammation marker

CPR-High sensitivity 4.65 range0.00-5.00

Iron status ferritin 40.3 range 13.00-150.00

Jazzw profile image
Jazzw in reply to Craigmhor39

Aha, you didn’t post the ferritin result before. That’s rather low. It might be the reason why you’re not converting T4 to T3 very well.

Have you had a full iron profile done recently? You may well have iron deficiency anaemia.

Craigmhor39 profile image
Craigmhor39 in reply to Jazzw

I have had full blood count and liver function done this month?

in reply to Craigmhor39

No FT3 test.

Sixteen years is a very long time to feel unwell. Why not take a private blood test, either Medicheck Ultra or Blue Horizon thyroid 11. Either of these will give you the results you require.

Take the test fasting, first thing and leave off Levo for 24 hours prior, then post the results with the ranges on here for answer.

This is exactly what I did after being ill on Levo and having my thyroid removed.

I now self medicate and feel well again. The money is well worth it.

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