Getting an increase in Levo: How can I get an... - Thyroid UK

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Getting an increase in Levo

Butterfly1942
Butterfly1942

How can I get an increase in Levo if my NHS GP and private Endo won’t increase based on TSH 2.9?

Any thoughts? I’m feeling much better than pre Levo, but know instinctively I need more than 50mcg. Spent a fortune on visiting an Endo/ expensive blood tests, to be told I probably don’t need the Levo!! Didn’t think a top level of TSH at 5.8 could make me so ill and that they see people with it in the hundreds! There’s me getting debilitating symptoms on a wimpy 5.8.

I had abnormal TSH for a year, declining T4 and a private GP did TPO antibodies and said I was Hashimotos. My Endo then did Tg antibodies suggesting TPO was the wrong one and it came back normal so has said not Hashi.

Where to go from here? Should I go back to the original private GP? Could he prescribe? He’d suggested I refer to the Endo as he thought I’d have a better chance of getting a treatment plan to share with my NHS GP that would increase the Levo , despite being in normal range on TSH- he felt I’d be banging head against a brick wall at my NHS GP otherwise. But now Endo won’t prescribe and informed my GP that they don’t feel it’s necessary and may take me off it.

Help anyone?

And if my NHS GP then decide to remove it from my prescription, what then?

31 Replies
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People tend to feel better when their TSH comes down to about 1, so I’m not surprised you know instinctively that you need a dose increase. If your GP and Endo are so resistant, then are you able to change GP? Or it may be worth asking the private doctor to prescribe, but then that locks you in to paying for your medication. To feel better, it may be worth it. I get my medication prescribed privately and it’s been worth it to feel well, but obviously it depends on your means.

Hi thank you 🙏

Yes I thought a lot last night about this and I think I might go to the original private GP first as he diagnosed Hashi and identified my having a problem getting an increase with bloods in so called normal range.

I know he does regular clinics so it might be I just have to pay for this element of my health. It would be worth it to feel back to health. X

You could always do a fingerpick test at home for your thyroid. Medichecks do a special offer on Thursdays. Then you could post those results on here.

Do you not get your Levo from nhs prescription?

Surely if you tell a doctor that you have symptoms and are struggling they would increase your prescription?

Maybe look at the list of symptoms on the Thyroid UK website, print it out and take it to the doctor and tell them how many symptoms you still have on the meds you’re on.

Thyroid UK also have a list of good endocrinologists, so you might want to see a different one maybe?

Good luck 🤗

Hello Lovecake

Yes I do get the 50mcg on NHS free prescription. I think that’s a good idea re my taking the symptoms list and I have tried thyroid U.K. list of consultants and doctors but none are in the Manchester area. I did post for private messaging for suggestions but it was closed down to prevent anyone posting names of course- but I think the original request then got lost.

X

You could always see a different nhs GP.

I just say it bluntly to them now “can’t function, no life......etc, plus all my other symptoms”

Ask them if you can try a higher dose. Tell them if it’s really not right you’ll lower it again.........perhaps

Follow the instructions on here about testing first thing etc.

Have you also had you vitamins and minerals checked? Made a HUGE difference to my wellbeing when those are optimal.

Good luck. Keep going, it will improve. ☺️

Yes good idea Lovecake. One GP has admitted she’s no expert but I think she might be open to an increase if I say what you suggested. I will absolutely drop it if it doesn’t help. Good idea 🤞👍

Ps

Yes vitamin D on the floor so she has prescribed mega doses for 7 weeks and I think this is helping so that’s a positive! All other vits were good and cortisol ok etc x

Be aware that many of us need to constantly supplement some vits.

The GP got my level up to about 80, then stopped. My level dropped again within weeks. I now take vitD, k2 and magnesium as recommended (I think SeasideSusie) on here. I need to keep my level over 80 to feel ok (plus also helps to reduce the frequency of migraines).

Yes I did wonder what will happen after the 7 weeks so will check on this. We need to take control of our own health don’t we? Xx

Certainly do. I feel sorry for people who have no idea that they are not being treated correctly/optimally and they struggle all their life.

Without the internet, this forum and a closed Facebook group I’d be one of those people too. Dragging myself about living a nothing life.

I’m not perfect, health wise, but a huge amount better than I was. ☺️

I’m so glad you are at a place where you can function and hopefully get those good days- I’m realistic too and think if I can just get to ok it will be an improvement on the none life- just literally surviving- where I was a short while ago.

Let’s hope someone somewhere gets a grip of this xx

SlowDragon
SlowDragonAdministrator

Getting FULL thyroid and vitamin testing via Medichecks next step

Do wish medics would read guidelines

gp-update.co.uk/Latest-Upda...

Starting levothyroxine treatment

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical

hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

New NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Thanks I going to print off and take it with me x

I’d be asking for my money back from that private endo. Useless f*ckw*t! Sorry you’re having such a struggle to do what is obvious to help you feel better. Not all private endos are like that fortunately, but you have to be careful. Good luck. 🤸🏿‍♀️🥛

I know- I’m reeling from the cost of blood tests and I had committed to spending the money as I just needed help. Now feel like I’ve made it worse.

And I’m sure my GP will be unhappy I’ve gone privately. I’m afraid I’m going to have to change doctors now. But I’ll be happy to pay for the private GP as I felt like he listened and wasn’t looking to blame everything on a virus and following fatigue.

I pointed out to the Endo that I’d had abnormal TSH all year and this was when I didn’t have a virus but this was skirted over.

Thanks for support xx

Hello Butterfly

Do you have written confirmation of Hashimoto's from the doctor who diagnosed you ?

As I understand things your levels will fluctuate as your antibodies attack your thyroid.

Over time, the gland is slowly weakened by these attacks and unable to function effectively. You experience phases when your thyroid hormone production becomes erratic as the gland dies and your ' goal posts ' in terms of optimal medication will change as you try and alleviate the symptoms expressed by this unstable major gland, that ultimately is being destroyed by your own immune system.

The original doctor should be able to help you but understand this is expensive and should not be necessary.

I'm with Graves Disease post RAI thyroid ablation and now self medicating as I was refused a trial of T3 and thought I'd have do this for myself.

It's not ideal but certainly less stressful and I'm fortunate in that I've no other reason to see the doctor so currently there are no awkward appointments to upset me.

I did inform both my doctor and the endocrinologist and offered to comply with the yearly thyroid check up providing both T3 and T4 were run as well as the TSH - I haven't heard anything back, and that was over 2 years ago now.

Oh my goodness that is neglect as far as I’m concerned. I’m actually horrified by the inconsistency and contradictions in treatment. Thanks for the information- I think it might be my best bet to go back to the GP who diagnosed and see what he suggests. I found him very open and supportive. Not that the Endo wasn’t supportive just had a very clear view of when and when not to treat and not really taking on board that I’m symptomatic. Thinks it’s all viral fatigue and mental health related, I suspect.

You are right though, I should not have to be paying for this or my medication- nor should you. Are you feeling well on your plan? X

Thanks in the most part to this amazing website and a couple of books I've managed to put myself back together again, guess I'm a bit like Humpty Dumpty, and my health is much improved.

I 'm not with your issues but do remember several people on here recommending the writings of a Dr Izabella Wentz.

Thank you I’ve googled that and her name came up- I too need to get reading and be a Humpty Dumpty too 😁😁

I've not read all the posts, but just wanted to say that since you're GP seems to have no idea they may frighten you with the suggestion that too much will damage your heart. That is true, but you are miles from too much.

Thank you 🙏 yes I’m on minimum dose so 🤞

Keep going to your NHS GP and keep explaining your symptoms. Ask for a 6 week trial of 75mcg of Levothyroxine. Be forceful but try not to be rude. If your doctors are in a practice with young colleagues, they might be more sympathetic.

Thank you- yes my NHS GP is lovely and I think I could ask. I’m going to get some advice from my original private GP this week- he diagnosed the Hashimotos- then next stop NHS GP as I would prefer to not have to pay for my Levo. 🤞

I've had no thyroid function since the late seventies and was always on levothyroxine from various GPs, checked annually in the past 30 years by TSH levels. But in the last twenty years myTSH has been too high and the GP has lowered my levothyroxine dose against my will, turning me into a cretin ( = Victorian word for person lacking in thyroid hormone, i.e. slow. incapable of thought, fat, gentle and lazy with swollen facial features.) This has been very disruptive in my career and family life. In addition in 2003 I had breast cancer, in 2010 I had a stroke, nad in 2015 I had a heart attack which resulted in a triple bypass. Because I'm used to reading medical literature I read about the functioning of the mitochondria with every cell in the body. It provides energy for the entire body from a reaction of two substances, one of which is the thyroid hormone T3. When you are prescribed levothyroxine you are getting T4, which is supposed to stimulate the remaining T3 circulating in your body. I worked out that in my body I had not had any T3 for at least 20 years because I'd been on levothyroxine monotherapy for 47 years. Lack of T3 meant a severe lack of energy produced by my cells, which firstly produced My blood cancer and then my severe heart troubles. Accordingly I asked my GPs and was told that current NHS guidelines forbade T3 under any circumstances. Now I'm buying it privately, Maybe you don't have any free circulating T3 either. Have you had it checked?

The way you have bern treated is tantamount to neglect! I’m so sorry you have had to go through these debilitating illnesses. I cannot understand with your illness that someone would not investigate your thyroid in detail to see if this condition has contributed???

I have asked doctor to post out my results so will add in here ASAP. I think T3 was described as within normal range but I bet it is low normal.

I thought some consultants will prescribe T3? It’s finding one though, isn’t it? I’m struggling to get anyone to increase my Levo from the min dose. It’s so wrong we have to go this x

pennyannie
pennyannie
in reply to Lopears

Hello again Lopears

I hope you are well, we spoke ages ago :

Did you buy the Book at Bedtime I recommended ?

I'm now on full spectrum thyroid hormone replacement and so much better :

Hope you have managed to find an acceptable level of wellness :

Good to see you ' chipping in ' :

Lopears
Lopears
in reply to pennyannie

Hi pennieannie,

I've just begun full spectrum thyroid hormone replacement and am waiting for it to work, I hope it will.

I didn't get your book yet - maybe tomorrow?

How are you now?

pennyannie
pennyannie
in reply to Lopears

I'm much improved on NDT - it's a slow build but I guess it depends where you start from. The book, along with this amazing website, definitely helped me find the confidence to go it alone.

Did you get some blood tests prior to starting so you know where you were.

I first noticed, better sleep, and my temperature slowly increasing - going from 35.8 to 36.6 over a couple of months, whilst my blood pressure remained stable.

We're all a work in progress, stress isn't good at any time, and I guess at 72 I'm obviously with some additional wear and tear picked up along the way.

Wishing you well :

Lopears
Lopears
in reply to pennyannie

I started on NDT last February but after a year it wasn't the right combination for me. Now I'm on levothyroxine and T3 since this February and waiting for results. But my current GPs and consultant are much more talkable to and more open to new ways forward, so I will be better off whatever happens. Thank you for telling me your age; I'm almost the same, 68. Do you think some doctors would prefer to bury us in advance?

pennyannie
pennyannie
in reply to Lopears

Yes, totally agree.

Oh, that's interesting, but I'm sorry the NDT didn't work for you.

I know some people add either T3 or T4 to the NDT and if that's the case it is probably easier to dose T3 and T4 independently to get a balance acceptable to the patient.

So good to read that you have a medical team ' on side ' - to support and help you :

Fingers crossed your health will improve as you find the appropriate levels of thyroid hormone replacement for you.

Lopears
Lopears
in reply to pennyannie

I think I'm very lucky to have lasted till now. Congratulations to you too! Good luck in the future.

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