Levo too risky to prescribe?!

I've spent most of tonight in tears.. The magical tsh range and how we MUST hit outside said range to get any kind of treatment, well what happens when after years of feeling like the walking dead and you hit outside there range and the doctor shifts the rules AGAIN!! And you walk out the doctors with zero dignity because you were reduced to a blubbering mess and yet another offer of the magical anti depressants because Levo has too many side effects and is apparently too risky to prescribe ūüėĒ

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  • So sorry to hear how awful you feel.My daughter is dangling around 4-5 and we are now awaiting endocrinology appointment. Could you ask for one to get another opinion?

  • I've had a second opinion, I've paid for blood tests, I've put up with the symptoms,I've changed gps, I've done the counselling that I apparently needed for depression, I've practically begged for medication and they move the goal posts every time.¬†

  • Make formal complaints in writing to the Practice Manager stating that the doctor has nothing to help you regain your health. ¬†All complaints will be brought up at the GP's revalidation. ¬†Worthwhile talking to the CQC in the hope that the practice hasn't yet been inspected. ¬†

    Rattle cages, that is our only option.  There's too many rubbish GPs getting away with not doing their job properly when it's our taxes that are keeping them in employment.

  • I'm exhausted on top of exhausted I sat there for 45 mins with her dangling Levo infront of me in one breath and taking it away in another, and asking me if I wanted it!! It felt like a trick question because the minute I said yes she would tell me why I couldn't have it as it's dangerous and how my body would adjust to my symptoms yeah just can't wait to adjust to a fat, baldy, spotty 30 year old teenager with the energy of a rock!! Sounds just awesome... Oh wait I already am all those things!!¬†

  • You could self-medicate.

    I was told my thyroid was borderline in about 1990. I didn't get my first prescription for levo until 2013. I stuck with it for 5 months, then gave up on it and self-medicated. Best decision I ever made.

    How long are you prepared to wait?

  • I'm not prepared to wait anymore I have thought about self medicating but it does worry me being on my own with 2 children and I'm not as clued up about what I should be taking as I probably should be so it puts me off.¬†

  • Once-upon-a-time doctors were well-versed in symptoms of hypothyroidism and could tell a patient was hypo as soon as they walked through the door - the patient didn't even need to explain.

    Some of them seem so insensitive to very unwell patients and too dogmatic in these modern times where they are told only the TSH is to be used as a diagnosis. They are so uneducated it is unbelievable.

    No blood tests for depression but given a prescription due to symptoms. The are unaware the depression is a clinical symptom of hypo and patient has a myriad of them - ignored.

    Post your results and ranges and if hypo you owe it to yourself/children to get better, despite the doctor's efforts to keep you unwell. If we don't get the hormones we required we can develop other more serious illness which we can avoid if properly prescribed. If he wont do so you can. :)

  • if only doctors done that now eh, I've posted my blood results now so hopefully I'll get more help on here than from my gp. Well not hopefully but most definitely¬†

  • <<No blood tests for depression but given a prescription due to symptoms.>>

    I think you make an excellent point Shaws!! I wonder if anyone has put this to their GP and how they responded.

  • I did he said i did have symptoms of depression????

    I argued the point....i get up look after kids look after my parents...go to gym...eat super clean...got a great optermistic viewpoint dispite feeling like total crap and the energy levels of a gnat...so his next move...referal to the endo...jeez same old same old...i so wanted to prove you all wrong and get the hormones real easy but alas...i didnt

    I did tell him in no way was i depressed and dont you dare put anti depressants on my record..

    When seing the endo he said my ferritin was low i said " oh is that the ferritin that is "in normal range" his face was a bloody picture...i might be on my knees with fatigue but im stil sharp...

    Anyway complete waste of time ive washed my hands with them im doing it myself thanx to you helpful lot xx many thanx xx

  • ¬†Thanks for sharing that kgeorge sorry it didn't work for you, but glad you have found your own way forward ūüėä

  • Hi,

    Self-medicating is working for me, I wish I'd known the signs & symptoms of my health issues in 1978, not 2014.

    Don't be scared of taking control of your health when there's so much help & advice on here.

    Mel

  • I hear you dear friend....im just out of range been through exactly what you have word for word....goal posts move all the time...gave up now self medicating with levo i bawt out in turkey while on holiday with what i will now buy online i have 5 kids 3 are autistic and i look after elerly parents so enuff was enuff for me research all you can and go for it...humanbean is absolutely right x

  • My results (Normal range ) ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†

    CRP 4.00 (<5.0)

    TSH 5.37 (0.27-4.20)

    T4 total 114.2 (64.5-142.0)

    FREE T4 16.67 (12-22)

    FREE T3 5.56 (3.1-68)

    ANTI THYROID 14.0 (<34)

    THYROGLOBULIN 11.1 (<115)

    VIT B12 526

    FOLATE 5.27 (10.4-42.4)

    That's my latest blood results 

  • That must be the biggest load of lies about levothyroxine and I would take it much higher with a complaint to a higher authority.

    Get a print-out with the ranges and post and also keep for your own records.

    You cannot be walked all over so easily. Levothyroxine has more or less nil side effects compared to Anti-depressants and hasn't your doctor learned that T3 has been and is used for depression in patients. Obviously not. 

    currentpsychiatry.com/index...[tt_news]=176104

    Copy and send it to your GP. Report him to the British Thyroid Association for telling you that levothyroxine is dangerous and denying you a prescription. First post so that members will comment upon your results.:) Don't get too despondent but it's no wonder patients are driven to distraction and relying so much on doctors knowledge which is woeful with regard to hypo.

  • My results (Normal range )¬†

    CRP 4.00 (<5.0)

    TSH 5.37 (0.27-4.20)

    T4 total 114.2 (64.5-142.0)

    FREE T4 16.67 (12-22)

    FREE T3 5.56 (3.1-6.8)

    ANTI THYROID 14.0 (<34)

    THYROGLOBULIN 11.1 (<115)

    VIT B12 526

    FOLATE 5.27 (10.4-42.4)

    Latest blood results taken last week

  • You need someone with more knowledge than me. I can see your TSH is over range but FT4 and FT3 in the upper part of range. He hasn't tested antibody levels or vitamin D. Your Vit B12 could be higher and about 1,000 is now the recommended from the P.A.

  • Actually, her FT4 is just below mid-range. Her FT3 is not too bad because, presumably, the high TSH is driving conversion.

  • What is the range for F T 3?¬† You show 3.1 thru 68?¬† Is that right?¬†¬† F T 3 range usually isn't that broad.

  • 6.8 sorry

  • I am with Shaws on this.¬† Nothing looks horribly out of line.¬† Your TSH is too high and your FT4 and FT3 are a little low.¬†

    But is your CRP a little high?  This usually means there is some kind of inflammation going on in your body.  Some folks try going gluten-free and, if gluten is a problem, abstaining makes them feel so much better and that inflammation number starts dropping.

    A little NDT or Levo might be helpful.  Maybe try some and see if your TSH drops some and your Frees numbers rise just a wee bit?  You want to be careful and guard against taking too large a dose of Levo or NDT.  Be sure to log/record  your body temp and heart rate each day.

     

  • For what it's worth I tend to agree with Phoenix and shaws, although tsh is a bit above range the others look pretty good.try not to become fixated that it is actually your thyroid,it could be ¬†but may well not be. Doesn't really help I know but possibly you could try the gluten free for a bit and see if that brings the inflammation and tsh down a tad which may be all that you need for now at least.that said I was treated at a tsh of just over 5 although my ft4 and ft3 were both lower than yours, and it did help, although at first even the small 25mg dose was too much really and sent ft3 far too high.so praps keep an eye on the ft3 and ft4 and if they drop and the gluten free hasn't helped you to feel better then demand nicely to get a treatment? ¬†Sorry can't be more helpful and can understand your frustration.

  • What about Thyroid Hormone Resistance - and I very much doubt anyone in the UK is aware of such a diagnosis. This is a small excerpt as I do know you have disabling symptoms, it would appear. Excerpt:

    Dr. Lowe: If a patient has either "general" or "pituitary" resistance to thyroid hormone, this is indicated by the results of thyroid function tests. However, our studies suggest that perhaps 40% of fibromyalgia patients have "peripheral" tissue resistance to thyroid hormone‚ÄĒnot pituitary or general resistance.

    Patients who have peripheral tissue resistance to thyroid hormone have normal thyroid test results before treatment with thyroid hormone. So, we don't know that they have peripheral resistance until we've treated them with plain T3. (Of course, we treat them with T3 as part of more comprehensive metabolic rehabilitation). A three-part therapeutic outcome tells us which patients have peripheral resistance. 

    First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages‚ÄĒwhich might hospitalize a person who doesn't have tissue resistance‚ÄĒthe patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.¬†

    Dr. Lowe: If a patient has either "general" or "pituitary" resistance to thyroid hormone, this is indicated by the results of thyroid function tests. However, our studies suggest that perhaps 40% of fibromyalgia patients have "peripheral" tissue resistance to thyroid hormone‚ÄĒnot pituitary or general resistance.

    " 

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

    Two excerpts from another link by Dr L: 

    "The fact is, however, TSH and thyroid hormone levels are highly unreliable indicants of whose body is under-regulated by thyroid hormone. The levels are so unreliable that the testing should be abandoned as the standard method for identifying such patients."

    and

    "Many researchers have noted that fibromyalgia symptoms are virtually identical to those of hypothyroidism.[56][57][58][59][60][61][62][63][64][65][66][67][68] Indeed, as my collaborator Jackie Yellin, has shown, the most well-documented features of fibromyalgia are exactly the same as features of hypothyroidism (see Table 1).

    Studies by several research teams indicate that 90% of fibromyalgia patients have underlying thyroid diseases.[69][70] Studies by researchers in the U.S., France, Germany, and Italy show that these thyroid diseases include primary and central hypothyroidism and peripheral cellular resistance to thyroid hormone.[57][71][73][74][75][76][78] It’s important to note, however, that most patients’ fibromyalgia symptoms caused by thyroid disease are compounded by other metabolism-impeding factors. The most common factors are poor diet, nutritional deficiencies, poor physical fitness, and metabolism-impairing drugs.[25]

    "

    When fibromyalgia patients receive effective treatment for hypothyroidism or peripheral thyroid hormone resistance, most are fully and lastingly freed from their fibromyalgia symptoms. Several open but systematic trials and several blinded studies have shown that metabolic treatment including thyroid hormone therapy completely relieves most patients’ symptoms.[16][72][77][79][80][81][82][83] In another double-blind crossover study, researchers reported a positive therapeutic effect on fibromyalgia from transdermal T3.[14] In a randomized double-blind, placebo-controlled study, clinicians used multiple therapies.[13] In that study, as Peter Warmingham noted in an article titled "Fibromyalgia has been solved,"[12] 90% of the fibromyalgia patients used thyroid hormone and 90% improved. These are the only studies in which patients have largely or fully recovered from fibromyalgia symptoms; each involved thyroid hormone therapies other than T4-replacement, an approach documented to fail to relieve a large percentage of hypothyroid patients of their symptoms. 

    "http://web.archive.org/web/20101030171110/http://drlowe.com/frf/guttler/addenda.htm#Addendum 1 

    p.s Peter Warmingham has written about the 'Myths of TSH'.:-

    thyroiduk.org.uk/tuk/thyroi...

    Dr Skinner and Dr Peatfield paid no attention to blood tests and took more account of the patient's disabling symptoms and provided a trial of thyroid hormones as did the doctors who trained in their era.

  • After several years ¬†increasingly hypo despite thyroxine,I spent 2 years in a depression,followed by 2 years chronic PROFOUND fatigue.

    Now that I have self medicated with T3 &   NDT,I can see how much time I have wasted,due to being too incapacitated to speed up my healing journey(brain fog,anxiety etc)

    The Thai NDT I take,which is used by millions worldwide,is available on Amazon.There are 2 brands.

    Both the T3 from Greece AND the NDT from Thailand are very economical.

    I have been able to find the courage to improve my health with the support & knowledge of this forum.

    I have not done this alone.

    It has been scary but the rewards can be HUGE in terms of mental & physical health.

  • What about the folate reading, this is under the reference level?

  • You have similar folate and b12 results to what mine were. It's worth trying a good b12 & folate supplement. I too was feeling dreadful and fighting to hang onto levo I had hike being told other bloods in range.So ¬†I decided to help myself. I take sublingual methylcobalamin, folic acid, eat Brazil's and walnuts for selenium and magnesium. Added in berries and banana for brekkie . My vit d level is apparently "ok" but I also feel far better after being in the sun despite the fact I've taken calcium/d3 for many years. Everyone's different but for me I can tell you I made a massive improvement. Last year I felt I was getting Alzheimer's at only 50, this year I'm almost ¬†back to me again (still fighting to hang onto my ¬†levo dose lol despite hvin no thyroid!)

    I wish you luck in finding out what helps you. X

  • Like Jan I noticed that your folate Is low. Can't believe this GP did nothing about your symptoms despite your TSH being over range.¬†

    Personally I would write to the practice manager about this as others have suggested. How can a trial of Levo be dangerous? If you are forced to self medicate then this is surely going to be more "dangerous" because you then aren't being monitored and don't know how much to take? 

    These people have responsibility to act on the ranges that are stated by their NHS guidelines and your folate and TSH are out of ranges so they must surely act accordingly. Time to get tough with this useless doctor and not waste your energy crying into the night when you have enough on your plate as a mum. They have a duty of care and as far as I can see they are in breech of this. Grrrrrr! 

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