Shockingly frustrating Dr appt!

Hi, I hope you don't mind, but I've come home from a Dr appt so frustrated I could cry! A few months ago I was started on 25mcg of Levo (I understand this dose is usually used for the elderly or people with heart problems - I don't fit into either category). She told me to come back again in 3 months (I understand it's better to test 6 - 8 weeks after a change in dose). Today I went in to find my TSH changed by a measly 0.6 (from 5.6 to 5), which she announced as 'improved' and was willing to just leave me on 25mcg & unmonitored on that basis! I still feel rubbish, and I know I'm not in range (0.2 - 4.2), so the fact she was willing to leave me there on an inappropriate dose and undertreated has left me furious. I did argue my case for an increase to 50mcg, but she's said to get a blood test in 3 - 4 months, and just to phone for results as it's unlikely I'll need to go in again! Not only that, but I can view my results online, and know that my iron levels are below range as well, but she didn't even mention that. I even prompted her - "are my vitamin levels OK?", and she said they're all 'fine'! Luckily I started self treating with an iron supplement once I spotted the results online anyway, but the lack of awareness has left me flabbergasted ....... Hope you don't mind me having a grumble! Just so frustrated, I feel a bit tearful!

19 Replies

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  • It makes me want to swear reading that. I believe you, when I got my records on line my iron levels have been below range for years! Nobody told me

  • She cannot know much about thyroid, I think a lot of them are the same - is there anyone else in the practice that you could see?

    I found the best way was to see one of the other GPs and try to rationally explain that you still have symptoms and ask them whether they would support you in trying to up the dose to reduce the TSH so that you can see if it makes you feel better. What some of them don't like is to be told! If you ask for the help they are more likely to support you and although this is totally wrong to have to accommodate them, it is sometimes necessary.

    I have my GPs on side and they are all very supportive, listen to what I have to say and allow me to tweak my own dose depending on how I am feeling and what my TSH is - I keep mine around 1.

  • Thanks. I might try & see a different GP next time. As you say, I'm going to have to fight my case a bit better whoever I see. Unfortunately I was so tired and brain foggy that I couldn't summon up the energy to do so this morning!

  • Oh dear MandShef , I feel your pain :(

    Right, roll your sleeves up and get ready to get stuck in :D You can't allow her to leave things like this so you have got to speak up for yourself, not easy I know, but needs must.

    The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

    Dr Toft article, past president of the British Thyroid Association and leading endocrinologist, wrote in Pulse Online magazine:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.

    So, armed with the article, I would make a new appointment ASAP to see your GP and request an increase in your meds.

    And as you know your iron result, you really should have said that you know that your iron level is below range so what is she going to do about it. If she says it is fine, you have to ask why do they have ranges then if a result below range is ignored.

    Is it ferritin that's below range? if itn is you really should have a full iron panel done, there could be other things that are out of range or too low.

    What other vitamin and mineral tests were done? Have you got optimal levels of Vit D, B12 and folate?

    I see from a previous post that you have Hashi's. Are you addressing that? Supplementing with Selenium? Gluten free? These will reduce the antibodies.

    With Hashi's TSH being kept very low or suppressed also helps reduce antibodies so another reason to increase your levo.

  • Brilliant advice!!!

  • Thanks so much for that. I will email for that article - it will be useful to have something to physically show the dr. It was my Mean cell haemoglobin concentration that was showing as low, so I've bought some iron supplements for that. Previously I have been treated for severe Vit D deficiency, but because my last test in April showed as normal, she hasn't been testing since. I have been supplementing over winter, so I'm hoping it's fine. I do have Hashi's. At the mo supplementing with magnesium, Vit D , Iron, Omega 3's and probiotics. I didn't know about selenium - I've still got lots to learn! I haven't tried gluten free, but I have been focussing on improving my gut health (live yoghurts, bone broth, probiotics, replacing normal bread with sour dough bread etc).

  • I don't know anything about low mean cell haemoglobin so I don't know if an iron supplement is the right thing, I would be asking your GP. It's normally low ferritin mentioned on here.

    Vit D should be retested once or twice a year to ensure the level stays within the recommended range of 100-150nmol/L and does go high enough to reach toxicity level. If your GP won't repeat the test then you can do a fingerprick blood spot test at home for £28 from City Assays vitamindtest.org.uk/index.html

    Have you been taking K2-MK7 with your D3, an important co-factor. Vit D aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues where excess can cause problems like kidney stones and calcification of arteries.

    Gluten/Thyroid connection chriskresser.com/the-gluten...

    Hashi's info:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

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

    Selenium, L-selenomethionine, 200mcg daily is recommended. This is the one I use, has no smell like a lot of others do cytoplan.co.uk/selenium - on 3 for 2 at the moment, I've just stocked up!

  • Thanks Susie. I have just started taking K2 with the D3, having seen this advice somewhere else on this forum. I'll take a look at the other info, and at the Vit D home tests :)

  • So very sorry to hear of your story, unfortunately it is so familiar, You , unless one of the lucky few who have a GP who understands the complexities of hypothyroidism, Must read, learn and way up all the I formation and see what suits you, As you are so early Into this thyroid problem I would along side the GP seek complementary health assistance lfrom someone who has had success with thyroid issues like a reflexogist , acupuncturist etc as someone who has been on levothyroxine for 29 years am seeing at last improvement through a reflexogist who has worked with similar thyroid issues with success. Very best of luck to you, xx

  • I'm lost for words when I hear a story like this ;( Mind you: mine own wasn't much better. I had to fight to get the diagnosis (growl).... Other members provided and excellent advice. You will get there but you will need to get your teeth and claws out to get the treatment you need ...figuratively speaking of course ;) Your GP desn't have a clue what she is doing. Don't let her leave you there with your TSH of 5. What do they teach them in medical schools??? Or perhaps she skipped all her endo training, did she??? Shame on her...

  • I think part of the frustration is knowing that there will be other patients out there, who won't have found advice forums such as this, who will be fobbed off with such shocking treatment. I am so glad for the advice on here!

  • MandShef,

    Please see another GP. If necessary change GP practice. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. The lower your TSH is the fewer Hashi flares you will have. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

  • Thanks so much. I have emailed for the Pulse article, and will investigate the provided links. I am going to see a different dr next time, and hopefully I will be better informed to fight my case!

  • MandShef,

    Hopefully the GP will be better informed so you don't have to fight your case!

  • Dr Toft article helped get my dose raised. Good luck!

  • MandShef, information is power. If you haven't already, I suggest you read 'Your Thyroid and how to keep it healthy' by Dr. Barry Durrant-Peatfield and 'Stop the Thyroid Madness' by Janie A Bowthorpe. Joining 'Thyroid UK' will give you loads of extra information. Good luck.

  • Little tip! Book your. Ext bloods as early as possible. TSH levels change throughout the day so are highest in the morning! Also food makes them decrease so to help your case stop meds on day so 24 hours from last dose and get appointment as early as you can and starve but can drink water. That way your TSH will be as high as it can be and hopefully help you to get an increase. Postcyour results and ranges when you get them.

  • I hugely sympathise with you..when I saw my doctor last..he said aren't l lucky; my blood test results was normal..l should take responsibility for the state l'm in perhaps do a little work out to improve..there're people dying from serious stuff...he made me feel like l was unnecessarily taking their time..hurried me out..Be strong & take care. Cry; cry lots. It helps me. Best wishes. Jools9

  • So much for the 'caring' profession! I recently went with my 22 yr old son to his Dr, as his levels were raised and Dr not interested, despite, endless fatigue and skin problems - only borderline. His Dr knows family history, my mother had thyroid cancer and lots of hyper/hypo's in family, myself being hypo. but as he 'has to follow a process' could not order full test and basically told me I was projecting 'my' symptoms onto my son. I explained I was 'recognising' that my son was having the same problems as I experienced for most of my life and I did not want him to go through 30+ years of being fobbed off as I had! Dr said my son was not me - I said yes -but he has my genes!!! Long and short of it - took my son to see Dr Peatfield two days ago. (I myself went 7 years ago - the best thing I ever did!) My son, like myself, is clearly, clinically presenting with adrenal deficiency. Dr Peatfields explanation made so much more sense. And he has given my son both a reason for his state of health and the means to deal with it. I'd lost my way a bit, having undergone a very stressful couple of years, Dr Peatfield also has also given me the means to get back on track. I highly recommend a visit, if at all possible. If not, his book is invaluable. He connects all the dots and gets to the root of the problem. And I totally agree with others, hard as it is, when you are feeling so low and fuzzy headed, read everything you can, Dr Peatfield's book is written in understandable language. Arm yourself with information and do not let the Dr's fob you off.

    People say that things are getting better, that Dr's know more now than they knew 10 -15 years ago - but I'm not sure that they even cover endocrinology in any depth, other than if bloods show 'this' give t4. Having rejoined a practice after a 1yr absence, my prev Dr, having retired whilst I was away, the Dr I have now been allocated, does not even know what T3 is?? (the meds I take) Scary! And as the 'powers that be' are now trying to eradicate T3 altogether...too costly, I do wonder which direction it is all going in.

    Go in armed...with as much info as possible, and where possible ASK/DEMAND (if necessary) what you want. You do not need to suffer. Good luck.

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