Increase Dose (but not telling GP)

[Tor76]

Hi I was diagnosed in 2012 with hypothyroidism and am now on 75mcg levothyroxine. Although all my labs show up as fine or in range (never told what they actually are), I still feel comfortable at analyzing tired and aches and my hypothyroid weight was 76Kg. Having dieted, exercised the weight never moved and was fed up of nurse telling me I was obese (I am also short!). So having some 100mcg tablets left I thought well nothing to lose. I started taking them about a month ago and I am now down to 69kg, and have more energy, and starting to develop an appetite and the nodes on my thyroid that I was told would always be there (sometimes pressing into my throat) seem to have gotten smaller so I can barely feel them, but I plus my brain for seems to be lifting, but I and my dry scalp and hair loss seems to be improving. But I am worried about taking the higher dose. Has anyone else tried this and should I mention it to my GP (I am afraid to I case he makes me stop)? Thanks for reading xx Also I take selenium, and magnesium and zinc supplements along with a lot of b12 but I have done that since I started taking thyroxine so don't think they have any significance in my changes.

[bluebug]

Firstly get your old test results from your doctor as per your right under the Data Protection Act 1998.

Go into the surgery and ask the receptionist for them. If they are recent you may be required to leave your name and address, wait a few days and then be able to call into get them. At some surgeries you may have to take a pen and paper with you as the receptionist will read them out while at others they will just print you a copy. If the results are older the surgery may charge you for them. If the surgery is being difficult they may refuse to give you them so you will have to write them a letter called a Data Subject Access Request to get them. If you do need to write a letter come back here for more advice.

Next if you are going to increase levo you should always do a blood test before hand. You can do this privately using Blue Horizon or Medichecks. They both do finger prick tests you can do at home and use the same labs as the NHS.

I suspect you were under medicated which is why increasing levo makes you feel better but without test results you can't​ argue your case to your GP.

[Kitti1]

Hi Tor76 and welcome

Do as bluebug says and then post your results on here. There are many knowledgeable and generous people that can advise you regarding your test results. What doctors say are 'fine' & 'normal' often means you are far from optimal and under medicated. It does sound like you have been under medicated.

Your have found the best place on the web to get support and advice. Email Louise Roberts, who works for the charity that runs thyroid uk,. Ask her to send you the pulse article to take to your doctor when your go to talk about your blood results

[e-mail]

I'm on my tablet at the mo .and can't do links, so will swap over to my laptop and give you a couple of good links to other articles.

As you will run out of tablets soon and if you pharmacist is like mine theyll soon spot your ordering earlier & earlier to maintain the higher dose.

[Kitti1 in reply to Kitti1]

These are also good articles to help your case at the doctors.

tpauk.com/main/article/crea...

web.archive.org/web/2010103...

Regards using your basal temperature as evidence. you would have to go back to your original does for 6 weeks to get a true reading at the end of it.

Also the blue horizon tests that blue bug mentioned are a very good idea. They will tell you if you are deficient in key nutrients - Vit B 12, vit D3, ferritin and folate. These are all important in converting your levo t4 ( a storage hormone ) to t3 the active hormone.The tests will also tell you how well or not you are converting t4 to t3.

[Kitti1]

After reading another thread and with reference to you saying the supplements your taking, it is important that you get your levels tested. It can be dangerous to take something you don't need like selenium and vitamin d. But its also important to know if you are taking enough. It probably is good that you are taking vit b12, but you may not be taking enough to make a difference.

[Clutter in reply to Kitti1]

Kitti1,

I don't think it is dangerous to supplement selenium and vitD without testing as long as you aren't taking high doses. 200mcg selenium daily is the recommended dose. Ideally vitD will be tested prior to supplementing to guide dosing and at least annually to avoid over supplementing but supplementing low doses is unlikely to cause toxicity.

[Tor76 in reply to Clutter]

I don't know if people on here are from UK or elsewhere but endocrinologists recommend hypothyroid patients take 200mcg selenium daily as this helps with converting T4 to T3, and whilst it helped slightly on lower dose I still didn't feel right which is why I upped the dose. In UK Drs won't prescribe T3 (liothyronine) as it costs a fortune for the NHS (it costs approximately £400), so they consider T4 sufficient as it supposedly converts to T3. However having read on Thyroid UK there are some people who are genetically unable to do so (a faulty gene, I forget the name of the gene now) and they offer tests to see if you are one of these people. However these tests are expensive so I am saving up for them!!

[Clutter in reply to Tor76]

Tor76,

Unfortunately having the DIO2 impairment will not guarantee being prescribed T3. If you want to know whether you are converting well or not post your TSH, FT4 and FT3 results and ranges in a new question for advice.

[shaws Administrator]

If you are not mproving it is obvious you need more than GP is giving you. I'd not bother mentioning until you reach a plateau in which you feel well with reduction of weight. It is obvious you weren't on sufficient as your weight has reduced and all the other benefits you've found out on your own.

Before blood tests were introduced in the late 50's/60's plus levo we were treated according to symptoms and relief of. So it is how we feel which is the best judge. You are not doing something deceitful, you are recovering your health.

Many on this forum are self-medicating.

[Kitti1 in reply to shaws]

If you are self medicating though you will start to run out of your levo at some point. You can buy it online without a prescription. I'll pm you the details. It is a good idea to keep on eye on your bloods too, through private testing. If you start to become over medicated you can become even more unwell. But how you feel is the most important thing as shaws says.

There is also the option of taking t3 alongside your levo if your not converting well.

[shaws Administrator in reply to shaws]

This doctor only took blood tests for initial diagnosis.

web.archive.org/web/2010103...

[Kitti1]

I completely agree that how you feel is most important. I expressed a note of caution because I know how tempting it is to up your meds with the aim being weight loss. After years of feeling so unhappy with your body and frustrated with no weight loss after lots of effort. Patients of doctor Lowe were just that patients under medical supervision and was experienced in looking for the changes in the body as the patient improves.

We know from experience how sensitive your system can be to changes in medication and how long it can take for symptoms to change after dose changes. Ie: low and slow with increases.

[Tor76 in reply to Kitti1]

Thanks for the note of Caution, but my sole aim was not weight loss, it was the whole plethora of symptoms....tiredness, brain fog, lethargy, the nodes on my gland getting in way of the way I eat (sometimes not being able to eat cos of the way they blocked my throat), the whole range really. Everything seems to have improved, and but don't worry I will be talking to GP about it when I get the chance.

[shaws Administrator in reply to Tor76]

Here are the clinical symptoms, which should - if properly medicated - resolve. That's the aim of replacement hormones - relief of clinical symptoms.

thyroiduk.org.uk/tuk/about_...

We should also know our FT4 and FT3 but these are rarely done as they are thought not to be important. I will give a link and you can see the reason.

thyroiduk.org.uk/tuk/about_...

[alyshablack]

Why do we settle for doctors that intimidate us, and treat us like idiots? Demand to have a copy of your blood results, that is first in my opinion. You can not properly treat any disease without knowledge of the blood levels.

The fact that you are feeling better on 100mcg is wonderful, but complications can still arise if the dosage is too high. The only way to know this is through blood work. I would suggest asking for a copy of all blood work that has been performed.

I hope my reply helps you with building the confidence you need to deal with your doctor. You deserve to be included and knowledgeable regarding every aspect of the treatment of your body. Best wishes.

[Tor76 in reply to alyshablack]

You're right I have just settled for years of "they are in range" and the only test TSH I believe anyway. I once told the Dr when I tried this years ago that feeling better would only be a temporary thing and to go back to my normal dose. I have done it again this time because I work in a fast paced job and can't be doing with brain fog or tiredness etc and I've done it longer than before and feel better so maybe I should book in an appointment. 2days ago I walked over 7Km (and still completely functioned in work) something I could never have contemplated before! I can swallow properly (the nodes on my thyroid sometimes got in the way and food got stuck so I'd end up having to drink loads to force it down). I suffer depression /bipolar so I am hoping that this will eventually clear up in the hope it is a result of hypothyroidism), the and not to get too gross but bowel movements have also improved. I am convinced that it is due to the increase in dose.