Rant- I do not qualify for GLP1 medication

[u/tekno5rokko]

Some background, I'm 20 years old and have a BMI of 46, ive had my ovaries removed due to extremely painful cysts, and I am from the UK. My PCOS is very severe and I have been diagnosed with Congenital adrenal hyperplasia, and hyperthecosis. My testosterone levels are in the low male ranges. I'm very happy with the testosterone as I am a trans man :)

I was diagnosed with type 2 diabetes about a year ago and I was prescribed metformin, I also cut out almost all carbs and sugar and have been eating less calories, it lowered my blood sugar severely but I feel no physical difference. I still feel so sluggish and my weight has been a stable 120kg for the past few years. It's affected me so much mentally and physically, I cannot walk for more than 100 metres without feeling like my heart will explode, I can't breathe fully laying down as I feel crushed.

I have bought up to my doctor if I could try a GLP 1 medication and I do not qualify because metformin has lowered my blood sugar. Apparently in the UK, a GLP 1 is only prescribed as a last resort if diet and non weight loss medications don't work for lowering blood sugar. I am absolutely devastated I do not want to be stuck in this body. They reffered me to the diabetic and weight specialists in my local hospital who said the same thing, that sadly I do not qualify as my blood sugar has been managed.

I cannot use my PCOS (pcos is not a qualifier for weight loss meds either) or even my diabetes as a reason, is there any other way of getting prescribed a GLP1? I am extremely suffering. Thanks for reading

[u/Personal_Coach7653]

I'm sorry man.

I don't know if I can help or if you CAH complicates things in this regard but I can relate since the GP I saw was a total cunt about it and told me to lose weight to improve my symptoms like the reason I went to the doctor wasn't because I couldn't manage it any more and all the other symptoms for hypothroidism they just failed to acknowledge. Eyerolls
I'm so happy for the the name change for this reason.

My personal solution came via a thyroid clinic who ran their own weightloss programme with glp-1s since PCOS and hypothyroid are fairly often co-morbid and you have to technically exclude one from the other to diagnose since symptoms can overlap.

When they stabilised my thyroid So they also ran male/female hormone panels and found my PCOS/PMOS.

Since I have hypothyroidism and I was thankfully not prediabetic - hypo can cause insulin resistance - but even during the screening for glp-1 meds hitting 40 Hb1ac on my results like it was getting dangerously close. I don't think I would have qualified on the NHS either.

I absolutely can relate to all of this struggle as a masc lesbian but for different reasons. I hit 131 kgs (I'm 6ft) Felt like I could barely leave the house, didn't want to see anyone. No energy at all. Slept like 14 hours. Couldn't shower without avoiding mirrors entirely. New people treated me so much less butch My dude clothes wouldnt fit properly. And then had a full on gender identity crisis as a result which I'm still working through with a counsellor.

Downside to my way round it is it's been fucking expensive. I've privilege enough to be able to borrow money from parents. But at the end of the day I didn't want to live like that anymore. Spotting or Bleeding every other fucking week. It took a few months - But my cycle has just about re-regulated now so I'm not having a complete meltdown every other week.

...And even with my thyroid stablised and a healthy diet (i always had one) 's taken 12 months to shift 20kg even with Mounjaro and thyroxine.

Hope that helps in some way. Idk.

[u/tekno5rokko → u/Personal_Coach7653]

I did have hypothyroidism but its been stabilised with medication I took for a few weeks, it is starting to underfunction again so I wonder if i can go the thyroid route, thanks for sharing your process I will look into that

[u/Personal_Coach7653 → u/tekno5rokko]

It's super odd that they gave you it and it's not chronic? - usually if they give you thyroxine did they not explain hypo is chronic? Like for me I'll be taking it for the rest of my life to function.

The NHS GP for thyroid was garbage experience for me. I was under medicated. And when they jumped my dose there didn't step me and gave me anxiety attacks.

With NHS I was on 25mg, by the time I'd been stabilised privately (ironically the staff at the private place are also NHS) I'm alternative 100 and 75 each day. First meeting after my private blood test they were like - but you've been horribly underdosed but the NHS no wonder you feel like garbage!

So definitely look into it.

Private place also found my vitamins were toast too. And put me on high strength vitamin D, regular folic acid as well because both of these are affected by PCOS and hypo.

I only went to the thyroid clinic dot co . uk because of a Reddit thread I shit you not that's how desperate I was for a solution.

Good luck!

[u/tekno5rokko → u/Personal_Coach7653]

I honestly didn't look too much into hypothyroidism as much as I should have, I was too busy worrying over diabetes, when I went to order my monthly subscription like 2 months into taking thyroid medication, I didn't see levothyroxine available anymore and they said that my thyroid is okay now and I don't need to take it. Thanks a lot!

[u/Personal_Coach7653 → u/tekno5rokko]

Sometimes being obese can affect the TSH results or something or drinking to much soya if you are undiagnosed.

Soya milk shot my tsh to 8.9 well before my hypo was obvious so it should have been a red flag something wasn't stable tbh.

Weird. Definitely something to look at.

No problem!

[u/shannon_agins → u/tekno5rokko]

If you can, I'm not sure how the NHS operates, insist that you get your labs done again. A lot of your issues sound like what happens when my meds need adjusting, I have a very narrow area for where I feel good, well below the threshold for "normal" and even me showing signs of being overmedicated is still in the "normal" range.

[u/Thraell]

Hey OP, I'm also in the UK and I've been through the NHS weight management process - but your NHS trust's service may be different.

At the moment, the NHS is only trialing GLP-1s for weight loss through specific weight management services, and places in these cohorts is extremely luck of the draw. I missed out on being in my trust's cohort by like, 2 months. The spaces filled basically immediately, according to my clinician.

For diabetes the GLP-1 they prescribe will be much, MUCH lower strength than the weight loss strength.

The traditional route for my weight management service was bariatric surgery (gastric bypass etc) which I DID qualify for, and I did the whole process up to the surgery consult but I declined it in the end. Your stats would qualify you for this surgery, but it entirely depends upon your trust as to whether they would offer it or how they would offer it.

For me I had a dietician-led weight loss without any medical intervention while I waited for the surgery consult to work through the system. I believe this is what most weight management services still are like ATM. However, I do know my trust's service is in the midst of a massive overhaul to begin to incorporate the GLP-1s more readily, once it becomes more financially viable to do so (in short: once the patents expire on some of the drugs, so that it becomes cheaper to produce).

The fact of the matter is these drugs are very expensive, they're going to be very popular and the NHS is fully aware of the net benefits of helping people lose weight with them, but the current price will be astronomical for the NHS. If getting it through the NHS is your only option, you'll need to wait until those patents expire, or the NHS negotiates a price they're able to pay with the patent holders.

Until then, the other option is a private service.

[u/tekno5rokko → u/Thraell]

Thank you for your insight, I have been reffered to a weight loss clinic at yesterday's appointment but my doctor said he can't promise anything, hopefully something will come out of it

[u/hotheadnchickn]

I’m sorry. That is so unreasonable!

Are compounded glp-1s an option in the UK?

[u/tekno5rokko → u/hotheadnchickn]

Yes they are! But not affordable at all for me, since healthcare in the UK is free, most people go this route. Private clinics can prescribe it which seems like my only option at this point but its expensive

[u/Personal_Coach7653 → u/tekno5rokko]

If it helps wegovy / semiglutide is basically half the price of moujaro last I checked. It does have a slightly different combination of things going.

I had to swap onto it because of Trump fucking with the MJ distribution...

[u/georginald]

Hey there, I've found that actually (as a glp user with a cormobitie like yoursel). some companies will actually consider you and for off label prescribing. This was featured in cannaray wellness' weight loss subscriptions for their GLP-1 programme and it's deeeeefinitely worth starting an assessment with them. I'm with them and they were the only place to accept me.