Under active thyroid

Hello I've just been diagnosed as having an under active thyroid, I've been given 25g of levothyroxine to start with and told to make an appointment for another blood test in 3 months. I have had symptoms of an under active tyrhroid for years but I think I've been mis diagnosed with depression, carpal tunnel syndrome and other symptoms. The doctor told me that my underactive thyroid was brought on by pregnancy, I had my baby 7 months ago but I'm sure I've had this for years... I was wondering as I have no idea about the blood results if I could request a copy and get someone to interpret the results as I've just had a phone conversation with the doctor and they didn't explain anything really just perscribed the drug. Has anyone got any good advice about what to do next?

24 Replies

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  • Kateybee Yes, you are entitled to a copy of your blood test results, you are entitled to them under the Data Protection Act. Ask your surgery for a print out and make sure you also get the reference ranges. Post them on here and members will comment and answer any questions you may have.

    3 months is too long time ago for your next blood test, re-testing should take place 6-8 weeks after starting Levo, a dose increase made, another re-test after another 6-8 weeks, another dose increase, and so on until your symptoms abate and you feel well.

    Always book the first appointment of the morning for the blood draw, fast overnight (water only) and leave off Levo for 24 hours. This ensures the highest possible TSH which is what is needed when looking for an increase or to prevent a reduction in dose.

    Always take your Levo on an empty stomach, one hour before or two hours after food, and away from other medication or supplements by a couple of hours.

    Take a look around ThyroidUK's main website (this is their forum) to learn as much as you can about Hypothyroidism. Start at 'About the Thyroid' on the left hand side (purple menu) and work down

    thyroiduk.org.uk/tuk/index....

  • Thank you I will do

  • 6 to 8 weeks is too long

    it should be every 3 to 4 weeks

  • I disagree RFU. Where is your source of information that it should be done after 3-4 weeks?

    Silverfox7 has explained it very well in her reply below and here is an evidence based article that backs it up

    mdedge.com/jfponline/articl...

    Quote:

    "Levothyroxine has a 1-week plasma half-life; a steady state is achieved about 6 weeks (6 half-lives) after the start of treatment or a change in dose. The TSH level should, therefore, be evaluated no earlier than 6 weeks after initiating therapy or adjusting levothyroxine dosage. The full effects of thyroid hormone replacement on the TSH level may not become apparent until 8 weeks of therapy."

    Kateybee - you would be well advised to stick to the 6-8 week time frame.

  • Delighted that the advice and years of care and treatment provided to my husband by Prof Lant is considered to be wrong .

    He always saw thyroid patients every 4 weeks and adjusted dosages accordingly and always in 25mcg steps in the early stages only later did he increase by 50mcg

    He and Prof Bayliss were at the forefront of treating thyroid and Prof Lant was one of the very few truly altruistic doctors who bothered to actually seek the true cause of ill health that others had ignored

    The current way thyroid patients are treated or more likely ignored and derided is more than evidenced by the never ending postings appearing daily on this forum .

  • I don't understand.

    Most of the time you tell everyone how ill your husband was on levothyroxine - yet here you are praising the professor who adjusted his levothyroxine by 25 or 50 micrograms?

    At least, that is what it looks like.

    I'd also like to know of anyone in the UK who ever gets to see someone as distinguished as a professor of endocrinology at anything like that frequency. Many people struggle to get a GP appointment in that sort of timescale. (Might be slightly different if urgent treatment is required as in some forms of thyroid cancer.)

  • Helvella it was over 20 yrs ago and no one could ever criticise the care and attention my husband received if it had not been for prof lant my husband would be dead because no one else recognised he was very severely hypo and well into myxodeama madness following surgury for graves yet his tsh was 2.9 and free t4 was 19

    this is precisely why i always warn anyone after graves that the body has been so highly sensitised to thyroid hormone it cannot exist on " normal " results ....my husband is also extremely chemically sensitive and thats why only NDT works for him

    Sadly today theres virtually no doctors around with the dedication and clinical skills Prof Lant possesed

  • Thanks for explaining.

  • Also Prof Lant always started on 25mcg of levo and would not inc by more than 25mcg until he knew the patients heart or metabolism could cope with 50mcg increases hence why on another thread where someone was started on 75mcg i do not think it was corect way to go

  • thanks i will do that. :)

  • 25mcg is a baby dose and levels should be checked and dose raised every 3 to 4 weeks

    no way do you wait 3 months

    go back and insist on

    ferritin

    folate

    b12

    vit d3

    also being checked as most likely they will be way below the very minimum of halfway in their ranges they MUST BE for your body to even utilise the levothyroxine

    you must keep a copy of all test results in a file

    never never take levo in the 24 hrs before blood is taken for thyroid tests

    and arrange for this early morning and fasting

  • My endo made me wait three months before increasing, ridiculous how clueless they seem to be, I asked to come back in 2 months the next time, but I know that was way too long as well. Both times all my hypo symptoms came back with a vengeance, that or my adrenals, which they wont even check, aside from one morning blood test of cortisol. Which came back high out of range but he said I'm OK. Ugh. I know I'm not, but no one, who is supposed to help me get well, seems to care or try real hard. I'm switching endo's! So sick of not feeling good, some days I feel like I'm dying. Can we all get a little compassion from the "doctors"...n not shrugged off! Sorry, I needed to vent... 😬

  • Stmuli, unfortunately even if you find a great doctor/endo, they simply don't know how to properly treat hypothyroidism/Hashimotos. The sad truth is they have very limited knowledge about the subject. They generally check your TSH, treat you with levo and they're done. Functional medicine doctors do extensive blood work and find the root causes of your thyroid problems.

    All conventional medicine doctors treat the symptoms with pharmaceuticals where functional med doctors treat the root causes! Unfortunately because of the extensive blood work that is needed to find out what your individual root causes are, insurance will not cover it. Nor will insurance cover your appts. since functional doctors don't treat the symptoms with pharmaceutical drugs. Big Pharma controls so much of how your doctor can treat you.

    So even if you find a great dr/endo with good intentions, their hands are pretty much tied. They have no training to find the root cause.

    It's really terrible, I go through terrible times as well. I seem to slip back and forth between hypo/hyper symptoms. I suffer with depression and anxiety which can be unbearable. And doctors don't even realize the connection between thyroid disease and depression, etc.

    There is a fabulous functional medicine doctor in North Carolina who provides videos about hypo/hashis. There are many videos which can be viewed for free. He has many long distance patients. If you are interested he has a Facebook page and group that you can access. You'll find him under "The office of Dr. Brad Shook". I have found all of the information I obtained from him to be invaluable. He specializes in thyroid disease and is the most knowledgeable doctor I know in this area. He has several autoimmune diseases himself so he truly understands it all

    Good luck, I'm empathize.

  • Thanks LiaDiGee! I read n try to learn as much as I can, so I will definitely check him out. I can't learn too much, wish the doctors felt the same way. My endo even told me my Hashimoto's hypothyroidism has nothing to do with gluten. Wow. It's so frustrating. I am on anxiety meds and antidepressants to try to keep myself out of the black hole. I finally got a different gp to run some more tests for various autoimmunities and gluten. I hope something comes of it. I'm tired of feeling so horrible, but have "nothing wrong with me". Yeah OK.

  • 6 weeks is the recognised time to retest as it takes that time for the dose to get up to its maximum. Leave it longer and you are waiting longer to get on tgecdose which is correct for you. Do it too soon and particularly as your dose increases you run the rust of going over medicated as the dose won't have reached its maximum effect and is still on the rise. Going over medicated is not pleasant, so patience is important.

  • I had second test at 6 weeks then given a blood test form to take In 6 months..that's about 3 months ago .. my form sTates TST funcion .... 1 x clotted with gel (serum) gold top ..... I am on 25 mcg

    does this test do Ferritin and folate etc. On the 6 week result she said results looked normal (don't know if she meant just in range) said there was not enough for a print out . First result in August was THS 3.94 and T4 13.9

    Should,I I just take this form to get my blood test now or should I PHone and get permission.

    I get the most scaring short heavy half hour sleeps two or three in the afternoon or e en late evening..think I am not going to wake myself up..weird feeling.☹️

    I sleep well and night and don't actually feel tired which makes it even stranger..

    my Vit D was borderline, but awaiting a bone scan in a couple of weeks, i do have wrist and arm problems, constipation etc, She said my other vitamins and hormones were ok on the first test ..

    Thank you for reading

    HAther 😊

  • Never accept 'ok' as a diagnosis! Get the numbers!

  • Hather The thyroid function test only tests thyroid. Ferritin and folate are not tested as part of it. Ferritin is part of an iron panel or can be done on it's own. You need to ask for vitamins and minerals to be tested or do them privately with Blue Horizon or Medichecks and they come as part of a thyroid bundle normally.

    "Not enough for a print out" - crikey, what does that mean? Your answer in that case should be:

    "That's OK, tell me what the numbers are and I will write them down"

    And make sure you get the ranges as well as the results.

    I don't think any of us can answer your question about taking the form now or getting permission. We don't know anything about how your surgery works or how they will react if you do things differently from what they told you.

  • Thank you seaside susie, she did give me the range (0.35 - 5.5 for the TSH..mine was 3.94 and (9.0 - 22.7) for my T4 of 13.9.. the first time.

    So I will phone the surgery to ask if I can have my 6 month one earlier if poss

    DO you think these deep short sleeps are worrying or part of the hypo..my blood pressure is now lower that it used to be now about 117-74-80.. before levo it was about 140 - 90 varies a bit of course

  • Hather I shouldn't image you're feeling particularly well with those results. You definitely need an increase and that should be ASAP. The aim of a treated hypo patient is generally 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. And the reason for repeat testing 6-8 weeks after starting Levo or any change in dose is to ensure you reach your optimal level as soon as possible allowing time for the change in dose to take full effect.

    I can't help with your sleep problem I'm afraid, I don't know anything about it. I could do with a bit of deep sleep myself though, mine is dire :(

  • sadly i disagree with the way you are being treated

    levels of ferritin

    folate

    b12

    vit d3

    are all utterly vital for any hypothyroid patient and unless they are all halfway in their ranges the body cannot utilise levothyroxine and convert it into t3 which every cell in the body needs to function

    it is a fact that hypothyroidism trashes many vitamins and minerals in the body especially Vit C and Vit B

  • Making you wait 3 months for a re-test merely prolongs the agony of feeling unwell. 6 weeks (6 half-lives) is sufficient if you are careful to take a tablet every day. A couple things you should be aware of:

    1) Most GPs do not check their thyroid patients for Hashimoto's autoimmunity, in spite of the fact that Hashi's causes most cases of hypothyroid. You should ask the doc to run TPO and TGB antibody tests, and bring the results back here.

    2) You should be aware that taking 25 micrograms of T4 (levo) is going to cause the amount of T4 & T3 made by your own thyroid, to drop. This is why you will be re-tested and will have to increase your dose multiple times until you reach a level where exogenous thyroid dominates and is high enough to relieve symptoms. The pharmaceutical companies who make thyroid already know that there is a "full-replacement" dose for T4, and that dose is about 1.5-1.7 mcg/kg body weight. So if you multiply your weight in kg by 1.5, that is about the dose you will probably end up on, assuming your needs are meant by T4-only treatment.

  • thanks Eddie83, its all really complicated! im going to make an appointment in the next couple of weeks and ask for those antibody tests and my blood results that have been done already, thanks for your help.

  • Yes the daytime 'naps' where you sleep so deeply then half wake up but cannot rouse yourself - def part of the whole hypo thing. I remember them well.

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