GP lowered Levo again dosing by TSH

[Watamu]

My GP reduced my dose from 75mcg per day to 50mcg per day after the blood test on 23rd October last year.. This was conveyed to me via a message from the receptionist, I asked her to request he didn’t do this as I am now on T3 and there should be notes on my records. I had some spare tabs so carried on with 75s until my next prescription was due, thinking he would have left it at 75. He hadn’t. Because the weather had turned colder and my symptoms were getting worse I had already upped my T3 to 20mcg a day from 17.5. I thought this would compensate for the reduction in T4 but it didn’t. With the cold weather and several personal things which were going on at that time I began to feel very stressed and anxious and symptoms were getting worse. In January I did a Medichecks test to coincide with my Roseway Labs consultation, this showed my T4 below the lowest level, but T3 looks ok. this is confusing me. By this time I was feeling quite ill so I emailed my GP requesting he reinstate my T4 to 75mcg. And enclosed the Medichecks test. I don’t think he even looked at it. I received a phone call from the surgery asking me to book an appointment. The earliest appointment with a doctor I felt would be more understanding was March 17th. I decided I wasn’t prepared to allow this stressful situation to carry on so I have changed surgeries. I have an appointment tomorrow with the nurse for a new patient health check, and another appointment on the 18th for a blood test. I read the Care Quality commission report on the new surgery and they had several ‘outstanding’ grades and comments about them taking an holistic approach to patients health. Fingers crossed I’m not jumping from the frying pan into the fire.

I need some advice please. I am slowly titrating my T4 back up to 75mcg per day with some spare tabs I have. I started 50/75 alternate days for a couple of weeks and now doing 50/75/75/50 and plan to carry on increasing until I’m back up to full 75 every day unless my symptoms improve massively before then. Can I increase more quickly? I take all of the T4 and 10mcg T3 when I wake up, then 5mcg T3 about mid day and another 5mcg late afternoon. I can tell when I need more T3, sometimes its four hour gap and sometime a five hour gap, so not consistent every day. I think I may need to reduce the T3 when the weather warms up and my T4 is higher, I’m still trying to get to my optimum but the GP was messing me up with his meddling.

I have a big problem with the cold, my body seems to close down, shaky, brain fog worse, walking through mud. Yesterday, with the temperature here at 15c outside, my core temperature was 36 all day. Earlier in the week it was 35. I bought an electric throw which has proved invaluable, I sit under it and do my work on my laptop in the armchair, when brain fog allows. These throws are a very good buy. Thank you.

Pituitary TFTPituitary TFT

Collected on 23 Oct 2024 09:52

Results

TSH

Your value is <0.03 mU/LNormal range 0.35 - 5.50 mU/L

Free T4

Your value is 16.8 pmol/LNormal range 10.5 - 22.7 pmol/

Medichecks 15th January 2025

Inflammation

CRP HS 1.02 (range <3)

Iron Status

Ferritin 157ug/L (range 30-332)

Vitamins

Folate -Serum 13.2 nmol/L (range >7)

Vitamin B12 – Active >150.0 pmol/L (range >37.5)

Vitamin D 121 nmol/L (range 50-200)

Thyroid Hormones

TSH 0.008 mIU/L (range 0.27-4.2)

Free T3 6.3 pmol/L (range 3.1-6.8)

Free Thyroxine 11.0 pmol/L (range 12-22)

Autoimmunity

Thyroglobulion Antibodies 429.0 klU/L (range 0-115)

Thyroid Peroxidase Antibodies >600.0 klU/L (range 0-34)

[Rapunzel]

I can see from your results that you're struggling. Have a hug 🤗

SlowDragon can perhaps comment on your levels, but it's more than evident that you need more T4. I really hope that your change in surgery will make a difference, it's always reassuring to have local people say the practise is outstanding. Well done.

However, I have a long memory and remember a case where a very worried Mama sourced thyroid hormone for her daughter and it nearly resulted in Mama losing her daughter. There was a lot of hyperbole from the medical profession about 'Doctor shopping' or 'GP shopping' until a patient gets what they wawnt. What this poor woman wanted was a solution to her daughter's struggle - that's all. Doctor shopping my big fat @rse.

All that's best of everything wished for you

[Watamu in reply to Rapunzel]

Hi Rapunzel, it was the Care Commisioning Quality control which rated it outstanding normally ‘Good’ is the norm. Still will have to see. This surgery is further away from me but I drive so not a problem. I have another doctors surgery practically opposite my house but they are inundated with patients from a new housing development of over 10,000 houses and growing, and no doctors surgery there yet! Apparently a surgery is to be built in phase three. There are two secondary schools and one primary school but no drs surgery, how mad is that!!!

[tattybogle in reply to Rapunzel]

they have found an effective cure for 'doctor shopping' where i live .. all 7 surgeries within a large geographical boundary now run by one large group practice with umpteen GP's who appear and disappear at random.... practices in next town don't accept patients living outside their boundary , so i'd have to move house to change practice. If we want to see a particular GP , they will consider if it we ask nicely and have a letter from God , but would usually have to wait a very long time for a 'GP specific' appt request even if urgent. So in practice i can see 'who ever they give me' pretty quickly , or 'no one' for umpteen weeks while i wait for who i prefer , or 'sell my house and move' whenever i want . .....hobsons choice .

[SlowDragon Ambassador]

Retest thyroid again after increasing dose levo back to 75mcg

Yes you will probably to need to reduce T3 by 5mcg after next test

Antibodies remain high

Worth trying Gluten free diet and few months later dairy free too

[Watamu in reply to SlowDragon]

Thanks SlowDragon, my new surgery phoned me yesterday asking me to book for a blood test, they must have all my records now, she knew it was a thyroid test, booked for next Wednesday. Long enough to stop all vits with biotin etc. I will still have a private test in a few weeks time. I have an appointment for a new patient health check today, I’m impressed already . I tried glutton free and dairy free some time ago and found no difference.

[SlowDragon Ambassador in reply to Watamu]

But even with no other symptom reduction on GF and DF diet you may see TPO antibodies slowly reduce

[Watamu in reply to SlowDragon]

Thanks for that, I did try gf free in 2023, it was very difficult because I love my own home made bread, tried several gf recipes which were awful and the bought gf bread has many questionable additives. I’m not a big cake lover but do make ginger biscuits and found a gf recipe but had a lot more sugar than I would like. At the same time I found that a lot of my symptoms I had for years , before being diagnosed with hypo were caused by histamine intollerance so I was also dealing with that . I thought the antibodies did a cleaning up job so I’m not so stressed about them. They have come down a lot, originally at >1300.

[SlowDragon Ambassador in reply to Watamu]

I take all of the T4 and 10mcg T3 when I wake up, then 5mcg T3 about mid day and another 5mcg late afternoon.

Is test early morning Wednesday

last dose Levo 24 hours before test

On Tuesday take last dose T3 about 8pm

You only need stop supplements that contain biotin

Continue with others until day before test

[Watamu in reply to SlowDragon]

Ok I’ll carry on with the folate tabs I received yesterday. I normally take Three Arrows with added folate but ran out a few months ago and must admit I was lax in reordering them but now have a good supply of those too. I take D3 4000 with K every other day now , trying to get back up to 125. Also restocked with Thorne B complex. Tried Igennus super B complex but realised the upset gut was probably the added vitamin c. I’m still trying to find a vit C that will be ok. I think I have more pots of vitamins I can’t use than ones I can.

[Watamu in reply to SlowDragon]

yes, will follow protocol, learnt my lesson about leaving too small a gap between t3 and blood test

[Rapunzel in reply to Watamu]

I'm never going glutton free, bae. Greedy girl...nay, insatiable! 😋

[SmallBlueThing]

Was the last dose of T3 in the late afternoon before the Medichecks test, which I assume was in the morning, before taking anything? A couple of times when I had tests sprung on me, about five hours after a dose including one grain of Thiroyd DTE, my fT3 was near the top of the reference range or slightly over.

My previous GP, after first following some policy that saw TSH just within the upper limit as OK, allowed me to go my own way over dosing. Now, I'm getting friction, and will have to discuss their concerns -- maybe over possible atrial fibrillation as I move towards antiquity.

Temperature-wise, I'm surviving quite comfortably in three layers of ankle-length fleece hoodies. I've gone off the type lined with Sherpa fleece, now preferring the type that appears in search results as light blue with a repeated dog pattern (like Deputy Dawg, but no hat).

[Watamu in reply to SmallBlueThing]

Hi SmallBlueThing yes I learnt my lesson a while ago about leaving enough gap between last dose of T3 and blood draw. I’m picturing you in your Deputy Dawg fleece hoodie, I discovered m&s thermal layers, usually wear three of different thicknesses, with a crop topped sports top instead of a bra. Their thermal tights are cosy too. I always wear a beany hat, fingerless gloves/wrist warmers. My heated throw has saved the day this past winter. Keep warm 🥰

[SmallBlueThing in reply to Watamu]

Thanks. I should mention that I'm "lucky" to have a calcium channel blocker prescribed for hypertension, with the side benefit that my hands and feet are now never cold.