Rant about Gp lowering levo.prescription!

[Judithdalston]

After a ‘we will have to agree to disagree’ face to face appointment with GP 7 weeks ago the next day he sneakily changed my levothyroxine prescription from 100 to 75 mcg, knowing full well the earliest I would able to speak to him( or another Gp) on the phone to argue my case/ complain would be 3+weeks. I have Long Covid with high BP and a high HR on standing or doing minor household tasks, diagnosed last Jan.by a specialist Falls consultant as postural hypotension…as my BP drops to 60/40 my heart beats fast to compensate. But Gp doesn’t seem to understand this and insists it’s ’overmedicated Levothyroxine’ thus lowering the dose. I take 3x5 mcg T3 too, which the Gp knows about via a private endo, and more recently Roseway Labs. On Tuesday got an NHS thyroid test, which surprise, surprise was TSH only, but I slipped in a Medichecks phial into blood draw for full sample. Yesterday got phoned up by surgery to ‘reduce your levothyroxine to 50 mcg’…the receptionist eventually found the TSH result at 0.03. We had the ‘no I am already back on the 100 dose’ conversation and how couldn’t talk to the Gp about this until got a phone appointment 3+ weeks later. Meanwhile got Medichecks results:

TSH: 0.029 ( 0.27-4.2)

Ft4 : 14.9 (12-22) , 29%

Ft3: 4.8 (3.1- 6.8), 46%

As well as the LC problems I have had fibromyalgia for a decade, and can certainly confirm that low thyroid hormones aggravate this with worsening all over body aches, pain in back, stiffness, headaches, constipation etc just from Dr.’s experiment in levothyroxine control! One tends to forget that such experiments are not just for the initial 6-8 weeks, but the same again( if not more) to recover. I have had 3 separate people who I see at my swimming pool , but don’t know my health state, ask ‘are you alright?’, such is the change in my posture/ body language. Why don’t doctors listen to their patients, or even take note of information their specialist colleagues provide ( my endo.had written to him say 2-3 years ago about suppressed TSH and I knew of AF/osteoporosis warning)?

[Sparklingsunshine]

I thought GP's weren't meant to change prescriptions without consultation with patients, that was sneaky, but with them its all about covering their arses and not your welfare that's important. Unfortunately a suppressed TSH is a very common side effect of T3. GP's are obsessed by TSH.

[SlowDragon Administrator]

options

See different GP to get prescription reinstated for dose increase in Levo

Get dose levo increase via your endocrinologist

Self source

With such low Ft4 and Ft3 likely low vitamin levels too

What vitamin supplements are you taking

When were vitamin D, folate, B12 and ferritin last tested

[Judithdalston in reply to SlowDragon]

It’s a 2 GP surgery so no real choice; in many ways he is efficient and listens, and admits he needs specialist help, but as a small Trust, he is rather unsupported. I have been referred to an Endo., out of Trust 2 hours drive away, who is also interested in heart/ circulation, but as yet have no idea if I’ll be seen. I would prefer everyone to leave my hypothyroid treatment alone, and find out, or at least treat, what causes my Long Covid high BP and HR, and postural hypotension…but the flashing light of ‘high HR…overmedicated hypothyroidism etc’ keeps intervening. For many years I have taken a lot of vit/ min supplements, where possible as drops/ sprays avoiding the gut (a long history of absorption issues, as well as Hashi and for over a decade I have no gallbladder and had acute pancreatitis/ septic shock which caused type3c diabetes so attendant reduced pancreatic enzymes). Plus of course using recommendations on this forum re. types/ brands eg 3 Arrows heme.

This May/July: b12. 115 ( 37.5-188)

Vit D 82 (50-250….. this is from 2x 4,000 iu with K2 drops 5 times a week!)

Ferritin 66 ( didn’t note range as had had some silly ones up to 660!)

Folate 18.5 (7-35).

So none of them great/optimal but so rarely get anything much higher, even with a good summer of sitting outside for example , or winter lunch of black pudding twice a week! My endo. was private and won’t write to my GP ( or Falls specialist) etc without another consultation (ie set of fees , as consultations themselves had deteriorated to little more than 10 mins.zoom appointments disturbed by anticipated parcel delivery, at full cost ), while my recent prescriber from Roseway Labs is not regarded by my Gp as sufficiently specialised to be able to advise. A letter of shock and unacceptable fibromyalgia symptoms on 75 mcg levo to GP due….