How to manage FT4/TSH levels when dosage is making me feel ill?

[Lowbattery]

Hi there, my first time on hear so apologies in advance if this post turns out too lengthy!

Firstly background: I had a hemithyroidectomy in 1989 for follicular cancer with a successful outcome. The ongoing treatment plan was for relatively high dosage of Levo (c, 200mcg) to suppress TSH to avoid recurrence of cancer and to shrink the remaining lobe. I remember the surgeon saying 'don't let anyone reduce the dosage'! So over the decades I have remained on fairly high dosage ranging from 175-225mcg at different periods and have been mostly OK. Oncology signed me off about 15 years ago and since then managed by GPs with annual blood screens for T4/TSH. I don't think they have ever tested T3.

Now for the problem. I had my annual blood test in Dec 24 and it came back with TSH of 0.008 (it has been that on previous tests) and FT4 22.3 (again it has always been at higher end of scale 17.5-21.7 over last 4years). However my BP was very high at 220/100 and GP not happy. I was put on beta blockers (BP now down to 140/80) but she drastically reduced my Levo from a 200/175/175 cycle to 150 mcg daily. Follow up blood test in Jan 25 (6wks later) was TSH 0.010 and FT4 20.4 and Levo further reduced to 100mcg. I'm exhausted on these doses and feel like everything is in slow motion and daily life has been adversely affected. I did call the surgery to say I felt 100 mcg was too low and they told me take 125mcg, which I don't think is going to help. She also referred me for an ultrasound to check there wasn't a recurrence of the cancer and thankfully all is clear. The radiographer said there was no evidence of any thyroid tissue - so well and truly shrunk!

So I started to research online and came across Thyroid UK which has been a revelation. My plan is to get a private blood test to include FT3 and vitamins as these have never been tested. Perhaps follow up with a specialist - but on reading posts this is not always productive. I'm wondering as I do not have any thyroid now is there still a need to suppress the TSH? Although that said lower dosage is not suiting me. Does the fact that I've been on higher dosages for over 30 years mean my body requires that level? I should say that I'm now 72 so again may have some bearing on it. I'm due to see GP again toward end of March but that seems a long way away at the moment and she is totally driven by the 'numbers' and not up for any discussion. Rather stupidly I did take my meds in the morning of both blood tests so will give it the advised 24hr gap next time.

I would really appreciate it if anyone has any insights to offer on how I can manage this situation. I've requested the specialist list but as I live in Cornwall it may be limited.

Thank you.

[Buddy195 Administrator]

Welcome to the forum Lowbattery.

I’m not surprised you are having adverse symptoms with all that changing of Levo doses. I would try and stay on 125mcg for few weeks and then test:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

Endos cannot be openly discussed in the forum- this will need to be via private message

[Lowbattery in reply to Buddy195]

Hi Buddy195, thank you for your response and thoughts, I'm learning a lot from this forum so a big thank you to all. It seems that in the Endocrinology world Thyroid issues are the poor cousin to Diabetes! I will be getting a private blood test and will inform the forum of results/progress.

[humanbean]

Does the fact that I've been on higher dosages for over 30 years mean my body requires that level?

If you've been on quite a high dose of Levo for over 30 years there is a possibility that your TSH might stay very low for ever, or it may take many months or years to rise. Since doctors use TSH to decide on your dose you will probably struggle to get a prescription with a higher dose.

Doctors ought to test Free T4 and Free T3 to decide dose. Free T3 is the better of the two for calculating dose, but Free T4 should also be measured to be sure it stays in range.But no - they insist on using TSH and completely ignoring symptoms. Free T3 is the test that reflects the degree of symptoms thyroid patients have - low T3 will cause more symptoms. But high Free T3 is not good for symptoms either. Many of us feel best with Free T3 somewhere in the top half of the range.

TSH is produced by the pituitary, not the thyroid. There are some people whose pituitaries can't produce enough TSH for the patient's needs, and that is referred to as Secondary or Central Hypothyroidism. Doctors usually ignore this possibility because they think the condition is almost vanishingly rare. But it crops up surprisingly often on the forum.

But in your case if your pituitary doesn't produce enough TSH for your needs it is most likely because you have been on a high dose of thyroid hormones for decades, rather than because of damage. But I'm only guessing.

Another issue is that doctors think older people (aged 65+, I think) don't need as much thyroid hormone as younger people. Nobody on the forum seems to find their logic on this very convincing.

There are quite a few people on the forum who go to private endocrinologists to plead for higher doses. There is no guarantee that this will work, but if it does - great. There are others on the forum who buy thyroid hormones on the internet and self-medicate. There are a lot of scammers who prowl the forum and offer thyroid hormones for sale to anyone who asks about it, and once you send them money they disappear with your money and no tablets turn up.

Please read this thread to find out how best to overcome this problem :

healthunlocked.com/thyroidu...

Welcome to the forum and Good Luck.

[Lowbattery in reply to humanbean]

Hi humanbean, thank you for your response (both posts) and thoughts which are all very useful and I will be following up with blood tests and any necessary vitamins.

[humanbean]

I forgot to mention that, although too low a dose of thyroid hormones will cause lots of symptoms, having low nutrient levels will do the same, and everyone with thyroid disease should test their levels and then optimise them. Low levels of nutrients is extremely common in thyroid disease and many of the symptoms of low nutrients can overlap with symptoms of hypothyroidism or hyperthyroidism.

The nutrients we suggest testing :

Vitamin B12

Folate

Vitamin D

Ferritin (iron stores)

If ferritin is low it is worth getting an iron panel done. It is possible to have high ferritin and low serum iron, and if the patient starts supplementing their ferritin may get much, much higher while serum iron stays low. There are other situations where ferritin might stay low and supplementation makes serum iron shoot up. Neither of these situations is desirable. But you need to know about them before you can do something about them, which means you need to test.

[pennyannie]

Hello Lowbattery and welcome to the forum :

Your doctor' s attitude reads very much like mine - and I too am in Cornwall !!

Once on any form of thyroid hormone replacement the TSH is the least important result the Free T3 being the most important reading followed by the Free T4.

Having had a medical intervention and your thyroid surgically removed your own physiology has changed and the Hypothalamus - Pituitary - Thyroid feedback loop - the HPT axis - has been down regulated as there is no thyroid in situ to complete this circuit loop - on which the TSH relies on as working well.

So it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and unfortunately even getting a T3 blood test on the NHS is a challenge, to say the least.

T4 - Levothyroxine is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body and said to be around 4 x more powerful than T4.

When I looked into finding help in Cornwall there wasn't anyone but I did see a doctor privately who suggested I should go on the ' net ' buy what I needed and he would monitor me.

After being refused both T3 and NDT by the NHS in 2018 - I did go on the ' net ' and ended up Doing It For Myself as I couldn't afford to keep someone let alone with a vested interest.

The thyroid is a major gland responsible for full body synchronisation from your physicality and stamina through to your mental, emotion. psychological and spiritual well being, your inner central heating and your metabolism.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4.

There are 3 main treatment options :

Some people can get buy on T4 monotherapy :

Others find that at some point in time T4 seems to not work as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with they are able to restore their T3/T4 hormonal balance and feel improved.

Some can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.

Whilst others find their health restored by taking Natural Desiccated Thyroid which contains all the known hormones as the human thyroid gland and derived from pig thyroids dried and ground down into a powder, medically graded, and made up into tablets , referred to as grains and capsules.

Conversion of T4 into T3 in your body can be compromised by non optimal levels of your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D - and just being in a NHS range somewhere, anywhere, is not conducive to good health and well being.

So I suggest you arrange your own full thyroid hormone blood test to include the TSH, Free T3 and Free T4 + inflammation, antibodies and the ferritin, folate, B12 and vitamin D and then start a new post with the results and ranges and we can advise your next best step back to better health and well being.

If you go into Thyroid UK - the charity who supports this patient to patient forum there is a whole page listing Private Blood Test companies - thyroiduk.org

I use Medichecks as they offer a nurse home visit service at an extra cost and cover Cornwall.

I've been self medicating since 2018 and just run a yearly full blood test and manage myself and much improved as to how the NHS would have me.

Details of my thyroid journey on my Profile page :

[Lowbattery in reply to pennyannie]

Hi pennyannie, thank you for your response and sharing your own experience with me. I now have a little hope that I can improve my health for myself on my terms. As you know we're not blessed with a plethora of GPs or specialists in Cornwall! So first step is a blood test and I'll update once results received.

[pennyannie in reply to Lowbattery]

You need to stop any supplements you are taking around a week before the blood test - also anything containing biotin - and arrange the fasting blood test for early morning, ideally by 9.00am blood test - which down here can also be difficult if living very rural -

if it's the same nurse as I see she lives up towards the North coast area, and other years I've had a lady drive down from Plymouth to draw my blood.

and remember not to take your T4 - Levothyroxine until after the blood draw - you'll b ok - T4 is a storage hormone and read of some who take a weeks dose all in one go !!

Please srart a new post with any new information - we try and answer all posts as thoroughly as possible within the first 24 hours of posting and then need to move on due to pressure of new posts arriving.

We are a patient to patient forum so you can read any forum members thyroid journey by reading their Profile page which you'll find by pressing the icon alongside anything they write.

We can all read what is being written so you do not need to keep repeating yourself and always try to remember to make sure you reply within the post of the person you are replying to as then they get notified by email that they have a message as not answering questions is not what we are about.

Ok - you'll also find much more information on all things thyroid on the Thyroid Uk website as already detailed.

thyroiduk.org

[SlowDragon Administrator]

Looking at your age …….lower vitamin levels are more common as we get older

Lower. Vitamin levels also more common after dose reduction in Levo

Do you always get same brand of levothyroxine at each prescription

Are you currently taking any vitamin supplements, if yes, what exactly

Request GP test folate, B12, vitamin D and ferritin levels

Or test privately if GP is unhelpful

Also exactly what beta blockers has GP prescribed

Is it propranolol?

I did take my meds in the morning of both blood tests so will give it the advised 24hr gap next time.

yes ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Or

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Lowbattery in reply to SlowDragon]

hi SlowDragon, thank you for your response and advice which I'm following up with a blood test. To answer your specific questions:

Do you always get same brand of levothyroxine at each prescription

I think it varies, currently have a mix of Teva and Accord

Are you currently taking any vitamin supplements, if yes, what exactly

I take Vit D and more recently Vit B12 and probiotics - but have never been tested

Also exactly what beta blockers has GP prescribed

Yes its Propanolol 40mg bd

You advise to do the private blood test on a Mon or Tues - is this for postal reasons? I'd like to do as soon as but may have to wait a week.

[SlowDragon Administrator in reply to Lowbattery]

Also exactly what beta blockers has GP prescribed

Yes its Propanolol 40mg bd

So make an appointment to discuss changing to different beta blockers as Propranolol slows uptake and conversion of Ft4 (Levothyroxine) to Ft3 (active hormone) ……propranolol is used to treat HYPERTHYROID patients

pubmed.ncbi.nlm.nih.gov/168...

rejuvagencenter.com/hypothy...

escardio.org/Journals/E-Jou...

Propranolol also lowers magnesium levels and parathyroid level

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

[SlowDragon Administrator in reply to Lowbattery]

You advise to do the private blood test on a Mon or Tues - is this for postal reasons? I'd like to do as soon as but may have to wait a week.

Yes because of post

At a pinch you can test Wednesday, if ensure guaranteed delivery next day

Do you always get same brand of levothyroxine at each prescription

I think it varies, currently have a mix of Teva and Accord

Many people find Levothyroxine brands are not interchangeable.

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

Accord only make 50mcg and 100mcg tablets.

Accord is also boxed as Almus via Boots, 

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

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.

Government guidelines for GP in support of patients 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.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[Lowbattery]

I just wanted to thank everyone who responded to my post yesterday. You have opened my eyes to management of my thyroid issues for the future. I'm annoyed with myself for sleepwalking into my current problem but on reflection the situation may have been brewing for a while with various symptoms which may have been attributed to other health issues. My first action is to get a private blood test and I shall be very interested to note T3 and vitamin levels. I have today taken 150 mcg and plan to remain on that until I next see the GP towards the end of Mar. I've only been on 125mcg for 9 days and am thinking the exhaustion/brain fog etc I'm feeling at the moment is a result of the Dec 24 decrease to 150mcg and will only get worse on 125mcg over the coming weeks. Thanks again and I'll update when I have blood results.

[pennyannie in reply to Lowbattery]

Ideally you need to be on the same dose of T4 for 6- 8 weeks to get an accurate blood test on the dose of Levothyroxine -

Propranolol is known to ' slow ' the conversion of T4 into T3 - and generally prescribed for hyperthyroidism - and I would think - the exact opposite of what you need to be doing - maybe need to consider a different beta blocker and read you need to come off Propranolol very slowly.