Help needed :(

[JenSetz]

Diagnosed with overactive in June 16, radioactive iodine Dec 16, levothyroxine from Jan 17...still feel awful yet apparently my 125mgs have made my levels “normal”.

[Aurealis]

The problem is that you don’t need normal levels, you need to feel well! A doctors job is to sort out your health problems so go back, and consult the doctor again about how you feel. There’s just one rule, don’t accept a diagnosis of depression or treatment for depression (as depression is a thyroid symptom and you don’t treat symptoms, you treat the cause).

Good luck, it’s so hard being assertive when you feel poorly. Try to time appointment so you can rest before and after it so you can put your energies into the appointment.

[JenSetz in reply to Aurealis]

Thank you for your lovely reply. Additionally to the thyroid issues I have been on antidepressants for 9 years, I was on Zopiclone for 8 years and now I’m on a ridiculously large amount of Amitriptyline in place of the Zopiclone. I feel dreadful most days and wake up feeling like a zombie with a hangover. I seem to be going round in circles with my GP...they just want to sign a prescription and send you on your merry way.

I have my next doctors appointment on Monday so I will push for answers.

I’m so glad I’ve found this site as I really need to be able to talk to people who know how I feel. I’m trying to hold down a full time job despite the way I feel from medication every day but my sickness record has been awful since my diagnosis. I’ve given up being honest when people ask me how I am as I just feel that everyone thinks I’m making it up as it’s been going on for so long.

[Aurealis in reply to JenSetz]

Yes I know that feeling when you hear your voice automatically say ‘yes, fine thanks’ when asked how you are, because life’s too short and no one has time to listen to the true answer. I’ve been there.... and I know what it felt like for me trying to hold a job down through all this

I wonder what a psychiatrist would say about your antidepressants and thyroid condition? Antidepressants are known to cause difficulties with thyroid. And some psychiatrists are reported to be knowledgable about T3. Just a thought....

Or perhaps GP has an idea what to do?

[JenSetz in reply to Aurealis]

You’re absolutely right, I just say I’m fine and move on...

It’s crazy because as well as the levo, Lofepramine and Amitriptyline I am also on beta blockers. I reduced my beta blockers (with GP guidance) last year and ended up in A&E 3 times because I was dizzy and all over the place. I’m back on them now. All of my medication must be counteracting. I’ve often wondered what would happen if I stopped taking it all but I’m not crazy enough to risk it! I’m just struggling with the fact that the GP doesn’t look at the bigger picture rather than just issuing more drugs. I’m 34 but feel like 84 sometimes.

[SlowDragon Administrator in reply to JenSetz]

Which beta blocker are you on?

Is it propranolol?

[JenSetz in reply to SlowDragon]

It sure is, 160mgs a day.

[SlowDragon Administrator in reply to JenSetz]

Then you need to discuss either changing this to different beta blocker or weening off it completely.

Propranolol is used to treat hyperthyroid patients. It slows thyroid hormone use and uptake

You absolutely can not stop this suddenly. That is very dangerous

It must be reduced incredibly slowly. 5mcg maximum reduction and then wait at least fortnight before reducing by another 5mcg etc.

You may need to take it even slower than that, because you may need to adjust Levothyroxine dose as result

The last 5mcg or 10mcg is by far the hardest. Cutting down to 5mcg and then to 2.5mcg. Then just stopping entirely one day a week, then two days a week (not consecutive days) etc etc

It will take months of slow steady reduction

Propranolol may also lower magnesium. Read as much as possible about importance of vitamin D, and how we need magnesium too

[Aurealis in reply to JenSetz]

Sorry to hear that, you’re very young to be on all these drugs. Are the beta blockers to counteract side effects of antidepressants? You can’t just stop them though!

Hope you’ve got an extended appointment slot.... your GP may need it, sounds like you need an overhaul. Good luck x

[JenSetz in reply to Aurealis]

The beta blockers were prescribed for headaches as I was suffering with them almost daily.

Thank you for your kind words. I’m determined to beat this and it’s great to hear from people who know exactly what I’m taking about x

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies. 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.

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. They can make nominal charge for printing but many will do so for free (can not charge at all after May 25th 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

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

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

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

NHS Endocrinologists are currently pressured NOT to prescribe T3 due to price charged to NHS

theyworkforyou.com/debates/...

[JenSetz in reply to SlowDragon]

Thank you for this. I am seeing my GP on Monday so I will ask for a copy of my most recent blood tests. I know they checked my B12 but not sure about anything else. I’ve spoken to a few people who have mentioned the T3. I will post my levels once I obtain them. Thank you for your reply, it’s good to know there is support out there

[JenSetz in reply to SlowDragon]

Hi there,

I’ve got my blood results and wondered if you could help me decipher them?

Thyroid Function Test - (SPS) - Normal

Serum TSH Level 2.96 mu/L

0.35 - 5.00 mu/l

Serum free T4 level 11.5 pmol/L

7.00 - 20.00 pmol/L

Serum free T3 level 5.5 pmol/L

3.8 - 6.70pmol/L

Any help would be gratefully received

[SlowDragon Administrator]

So for full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

[pennyannie]

Hey there, this is gong to be so easy to write but oh, so so not easy for you to do.

I am in a totally different situation than you but recognise much of what you write. I too have had RAI but in my late 50's. You sound all over the place, and you will be, your thyroid, the conductor of the orchestra, that is your body, has been disabled and the fine tuning ability you once relied upon is no longer there.

Like driving a car with only stop and go and no control over the steering.

I am still with my " L " plates on, you will receive a lot of very good advice on here. You will need to read and understand your situation and sadly, you might go around in several circles before headway is made. From my experience the help in primary care is one of treating issues rather than to deal with the elephant in the room. Can I suggest you get referred back to hospital where RAI happened, they are better qualified to deal with this specialist area, and have probably "seen it all before ", rather than your doctor who might be as " green as you " and out of their depth.

You can't beat it, you need to stop fighting yourself - and allow your body to understand what has happened, continuing to work whilst so unwell should not be an option. Get signed off and get a referral back to square one - the hospital. Take some time for yourself, you need to adjust and accept what you can and can't do, at this point in time.

It won't be forever, but for now - remove any stressors you can ?? I know, it's not easy and so hard when not well and feeling as though you are in " free fall " without a parachute.

Your parachute will be this site - stay with us, you will learn so much and find a way forward. Take god care,

[JenSetz in reply to pennyannie]

Thank you so much for your response. I’ve definitely made a good move by joining this site as being able to converse with people having similar experiences makes this all feel a lot less lonely.

I have some research to do and need to plan my next move carefully and you are right, I need to be back in front of the medical professionals who understands these symptoms.

As much as work is a struggle I have to be there because I’m pretty sure that I’ll be managed out if I take much more time off work. I like the routine that work gives but I think I may need to look at additional support. I am single with no dependants which is good in a way as I only have myself to look after but as the years go on I’m reducing the chances of my dream of having a family. I also need to work to keep my flat that I worked so desperately hard for.

Thank you so much again for your kind and understanding words.

[pennyannie in reply to JenSetz]

I understand the work situation, and being single myself, always prioritised my work. Nothing means more than your health, and if you fear that by being " off sick " you'll be outmanoeuvred, trust me, if it's going to happen it will occur in another devious way.

If your doctor can't fast track you back to the relevant medics who managed your RAI treatment, I think it might be wise to just turn up in A & E with all your papers and ask for their help. They are on sight and can call on an endocrinologist within minutes of come and assess your progress if they feel out of their depth.

Take good care.

[JenSetz in reply to pennyannie]

Thank you so much 😊

[Hidden]

I have had the most miserable life, adopted, throw downstairs losing the sight in my eye, no thyroid and no gallbadder, but guess what I don't take any medication only NDT and never visit the doctors they get paid extra for prescribing antidepressants. By the way I feel well and I am in the middle of buying and selling a house and I am 72 years of age, life is what you make it tough or good it's up to you. Good Luck

[JenSetz in reply to Hidden]

You’re absolutely right, life is what you make it and without going into detail I’ve not been dealt the best hand in life.

I’m trying so hard to keep it together with a positive attitude. I won’t lie, it’s hard because most days I feel like I’ve done 10 rounds in a ring with Mike Tyson. I put a smile on my face at work and no one knows the true extent of the conditions that I’m managing.

If I could do my time again then I wouldn’t be on the meds I’m on now but hindsight is a wonderful thing. At my last GP appointment my doctor said these words about my medication ...”we’ve poisoned you and now we need to fix you”.

All the best with your property sale and purchase and thank you again for your reply.

[jgelliss in reply to Hidden]

Bunnyjean

Your a Great Inspiration . You rose above all the hardships you endured through life .

Strength and Blessings to You !!!

[JanetGarrettN]

Hi JenSetz

I live in the U.S. I have have had my total thyroid removed and two surgeries 2009 and 2012. Currently my levels are swinging between Hypo and Hyper due to my Prednisone usage for an autoimmune disorder just diagnosed in the fall. I have been on anti-depressants for 20-plus years starting with fibromyalgia. Based on your comments about the way you feel and now being on Amitriptyline, that hung over feeling you describe sounds specifically attributable to your antidepressant in my non-professional opinion. And we are not looking just for lab levels but symptoms and conjunction. This is not black and white it is trial and error. Things are done very differently in the UK than here. Best of luck to you. Janet