learning to live with it. : Hi all hope everyone... - Thyroid UK

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learning to live with it.

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Hi all hope everyone is well. So I suffered from covid shortly after I had pain in the back of my neck that then spread to my knees I had an increase in weight felt low mood. after various tests thinking it was arthritis & seeing the doctor to say that my throat was painful & felt full. routine bloods tests & scans showed thyroiditis scaring on my thyroid (that appeared old) this was treated short term & monitored closely to see if I actually would have it long term or maybe it would clear up I started on 50mg this helped for a while & after bloods the specialist said it’s defo staying with me. my knee pain cleared up & my life got better I then started to feel tied all the time weight gain crept back in & I was so low in mood sometimes creeping in to a very big high then back down again my hair got brittle my nails feel apart my eyes got bad to the point I found it hard to see I have psoriasis dry eyes & blephitis I have been told I have depression as a result of it all. I always feel most worse with lack of sleep. When I feel good I do far to much then suffer bad like the other day I cleaned the cars an mowed the lawn then spent the rest of day on the sofa unable to move. I spoke with the doctor yesterday an have more bloods booked in for next week my diet is awful I am partially vegetarian so eat very little really I don’t take vitamins as I’m unsure as to what to take I really need to be kinder to me so any help recieved gratefully.

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greygoose profile image
greygoose

How long have you been on 50 mcg levo? That's only a starter dose, and should have been increased by 25 mcg six week after starting it. It really sounds like you need an increase!

To know what supplements to take, you need to get your vit D, vit B12, folate and ferritin tested, and supplement according to what you need. We can help you with that once you've posted results and ranges. :)

in reply togreygoose

Hello & Thank you for the response. I had an increase in June up to 75mg as I dramatically went down hill & was told yesterday that it was in the red & I should of had more bloods done after the increase to check it was okay & the right dose for me. I still feel very unwell as my up days are maybe twice a month most of my days are spent being tied snappy argumentative feeling just not my self at all very forgetful no attention span almost foggy in the head. Not wanting to talk or be in others company I get very irritated very fast a weird taste in my throat that feels full sometimes acidly. I don’t honestly no where to start or what is related to thyroid I had a very dramatic dream a few months ago where I actually lived out my dream my husband woke me I was on the landing with my hand pouring with blood my dream was reality & I lived it I though I was going crazy still do some times. I can’t see an end an the depression is getting worse I’ve had a change of depression med yesterday but I don’t no my triggers other then sleep an it’s not getting better & I don’t no how to make it all better or where to start. Thank you for your response :)

in reply to

I honestly don’t no what my results ever are I always get the doctors on a bad day an never think to ask what it all is. The most I no is yesterday he said I had primary thyroid issues & sent me some links. It’s affecting every aspect of my life an I no so little about it all. :(

greygoose profile image
greygoose in reply to

Sounds like you're still very hypo. 75 mcg is still only a small dose, and you should have been retested after six weeks on that dose. Your doctor is being negligent to say the least!

Do you always get copies of your results after a blood test? It's your legal right to have a print-out, so ask at reception - don't bother asking the doctor, waste of time. It's not your job to know how to make it better, or where to start. Your doctor should be doing that! He sounds like a right waste of space!

We all start out knowing nothing about it, and we have to learn. Keep reading posts and responses on here, and you'll soon know more than your doctor! Because doctors don't know much about it, either, so that's why forums like this exist. By telling you it's Primary Hypo, he's telling you nothing at all! lol But, I'm surprised he knows that much. All that means is that your thyroid is failing, rather than any of the other reasons for being hypo. But, it doesn't tell you why. Has he even tested your antibodies?

So, to sum up, what you need is full thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

If your doctor won't do them all, then private testing is available. :)

SlowDragon profile image
SlowDragonAdministrator

So you’re still on 75mcg every day?

Only brand that makes 75mcg tablets is Teva

Teva brand upsets many people

What brand levothyroxine was 50mcg tablets

So it could be brand…or you just need next dose increase

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 levels tested

If not these need testing….request GP test

Plus thyroid antibodies if not been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

ESSENTIAL to have GOOD vitamin levels

If poor diet and mainly vegetarian, likely this needs improvement

Approx how much do you weigh in kilo.

Guidelines on dose levothyroxine….is to increase dose levothyroxine slowly upwards until TSH is always below 2

Most people when adequately treated will have TSH around one or less and Ft3 at least 60% through range

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

SlowDragon profile image
SlowDragonAdministrator

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Contact receptionist to get results and ranges

Hello. So yeah I have checked & the brand is TEVA. I have one in a 50mg then one in a 25mg I’ve tried all the things they say take with water take at the same time I usually wake up take them then go back to sleep for the half hour so I don’t eat or drink in that time with out impacting me to much. The doctors treating me for depression to be honest I’m not sure I have but I do feel down tied exhausted lethargic a lot of the time I only work 30 hours a week but some times it’s all to much & my body hurts like deep inside. Being tied is the worst & I find it hard to shake it as if I get tied I really feel sad so although he’s treating me for depression I feel it’s all thyroid related & I don’t have depression. I feel like they arnt hearing what I’m saying. It’s all swings and roundabouts & I feel half the time that I’m loosing myself. :(

in reply to

I honestly don’t no what they have done or not done they really don’t keep me very much in the loop it’s taken me ages to get this far I haven’t seen a doctor either it’s all done on the phone. I really don’t think they no what to do. :(

Lotika profile image
Lotika in reply to

That really does sound classically hypo - or like me on the wrong dose of meds, Smudge85.Easier said than done when you feel bleugh, but you do need those test results. Unless you are v petite and skinny (sounds like you don’t eat a lot so quite poss?) 75 mcg is a small dose and unlikely enough. I weigh 9 st and on levo only I should be on about 100+ mcg according to dosage by weight, to give you a bench mark.

The other possibility is that you are taking enough thyroid meds but because hypo trashes your gut; have vitamin deficiencies and your body is not converting T4 (levo) the storage hormone into T3 the active hormone. It is actually T3 - not T4 - which makes us feel well. Randomly, the doctors in the U.K. don’t even test this, for reasons which escape me… xx

Thank you so much for reply’s. To be honest I find it hard to get my head around it all at one day your fit as a fiddle with a few things wrong but it’s manageable the next you have a life long condition & it changes everything. My family say I’m Bipolar that’s how bad it can get the depression (the doctors say I have I think it’s all thyroid) is so up & down mostly down but when I’m up I’m up so high but crass really soon after. It’s hard getting to grips with it all. :(

SlowDragon profile image
SlowDragonAdministrator in reply to

75mcg levothyroxine is only one step up from starter dose

Unless extremely petite likely to not be on high enough dose

Approx how much do you weigh in kilo

Feeling blue/anxiety/depression are all common hypothyroid symptoms

First step is to get FULL thyroid and vitamin testing done, 6-8 weeks after each dose increase (or brand change) in levothyroxine

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

Suggest you increase dose or change brand……but don’t change two things at a time

If GP will increase dose, grab it and get settled on 100mcg and retest levels in 6-8 weeks

….then in another 2-3 months consider trying different brand levothyroxine….if not ready for next increase by then

Hello I’m about 53 kilos if I’ve converted it correctly about 8stone 4pounds. But this is me at weight gain I have always weighted 7&a half when diagnosed I was 8stone 12pounds the heaviest I’ve ever been I’m still not at my comftable stage I started running in January as I was weight gaining still but it goes up & down even now the running is hard to keep on top of due to the tiredness & my energy is consumed in work & family life that I find it hard to muster the strength to be kind to me. It’s a circle I can’t brake. :(

Batty1 profile image
Batty1

Psoriasis eyes? If you have psoriasis you could have psoriatic arthritis which could explain the pains coming and going.

I have hypothyroidism and psoriatic arthritis and its hard to tell which one is causing issues because they both cause fatigue, migraines, pains and so much more both diseases are life sucking.

You need to get a copy of your test results and post them here.

Thank you. I going to sort out my online consult this week that hopefully will have all of my test & results. Thank you so much for the reply :)

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