Is this ever going to get better :(

I have been diagnosed hypo after a blood test result of tsh 80+ and t4 5+. I am currently on 100 mcg of levothyroxine for the past 2 months. my doctor says Iv possibly had this years....I dont feel any better altho I had 1 day when I felt amazing! Im a store manager thats very hands on and Im struggling. Ive had spinal fusion due to weight gain for the last 9 years and would love some help....or a hug

13 Replies

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  • Here's a hug (((((((((((Lou))))))))))))

    Did your doctor test your Vit D, Vit B12, iron, folate and ferritin levels? If not, ask for them to be tested. Ask for a print-out of all the results, with ranges. You aren't interested in your doctor's idea of "normal". It is common for hypo people to be deficient in one or more of these and all need to be well in range for you to feel well and for your meds to work.

  • awww, thanku. He did do iron i think and chloestrol but he didnt mention anything. i have had to have another blood test straight after diagnosis to rule out anything "sinister" which i guess no news is good news. i rarely see the sun or outdoors so vit d may do me some good. im going to see him again on my day off on friday as i am not happy....i think pmt (which i have never suffered from) is causing me issues on top of my thyroid issues! i was so relieved when i was diagnosed but feel a little deflated. thanku for your reply and good advice :)

  • Make sure you obtain as many copies of your tests as possible - with ranges :-) As others have said. Have you had thyroid anti-bodies tested - Anti-TPO and Anti-Tg. You may have Hashimotos and this test will confirm

    Also VERY important to know if the 100mcg of T4 is converting into the ACTIVE hormone T3 - needed in every cell of your body. T4 is a storage hormone.

    Hope all goes well with the Doc on Friday. Backs are often a problem with Hypos and also B12 deficiency....

  • Hi I'm sorry you are still feeling unwell. If u have been suffering from hypothyroidism for several years it will take time for your body to adjust to the thyroid hormones you are now taking. Your GP should be arranging blood tests to check your levels regularly until you feel well. Make sure you get a print out of your results and post them on here for knowledgable members to comment. Rosetrees has given good advice about vitamins. I was very ill when I first started Levo and was off work for 4 months before I was able to function properly. Be patient and in the meantime rest and sleep as much as possible, eat a healthy diet And be kind to yourself. Big hugs xxx

  • Aw LouAllen, I'm not really a hugger but I would hug you. I have the utmost sympathy for thyroid patients in the UK. The neglect, the abandonment, the sheer mistreatment that people have written about here makes me shudder. You probably have had this condition starting years ago. It may start from stress and cortisol putting the adrenals into a spiral. So you may need to support your adrenals while your thyroid treatment is ongoing.

    This website is wonderfully helpful and easy to understand.

    stopthethyroidmadness.com/l...

    This type of doctor seems to understand Hashimoto better than endocrinologists.

  • Re the video. I love his comment that a lot of doctors want to help, they just don't want to spend a lot of effort doing it! How true.

  • Big hug from me! You have been through a lot - It takes time to get better from overt hypothyroidism - you must be a patient patient...at first anyway. You have come to the best place for support and guidance here and it will definitely feel better. I expected an immediate recovery after years of illness - that proved to be unrealistic, but a good recovery over a longer time scale has happened for me. :-)

  • People are good at hugs on here :)

    Getting better is a slow process, but you can get there. I think it can be overwhelming to read all the different advice on this site, and to consider what you might or might not need to do. However, for me, I find it easier to deal with one or two things at a time.

    I didn't understand any of the terminology at first, and certainly never understood blood test results. I have got to grips with much of that now, and am getting more assertive with doctors. It isn't nice to feel that you should have to fight for your health.

    Apart from learning more about your condition, this is a nice, safe place to let off steam and to talk to other people in the same boat.

  • Big hug for you. I had a high tsh 95....And also believe I was untreated for a long time. I am going on a year and a half. Its taking time. And its the first time for like 3 months my level is good. I am feeling so much better from were I started. I think having not had treatment for a long time caused many problems for my body. Slowly healing....... I believe not like a switch you just turn on with meds and all is well.....after doing some damage .....from no meds for so long. Hang in there. I am good for the hugs....but many people on here know so much and can help along the way......All the best to you. Susita

  • Thankyou all so much to take time in your day to make me feel better. I have felt so much support! I was telling my husband your replies and I think he was grateful too that there is a good chance his wife will be returning shortly :)!!! Im going back to the doctors on Friday and will ask for my total results and will probably bore you with many questions. Thanku all so much!!xx

  • Has your TSH came down since being on levothyroxine? Did you mean to type TSH 80. When my TSH got to 10 I was referred to an Endocrinologist. They were talking about pituitary problems. I was thoroughly checked out and it was not my pituitary. I had half of my thyroid removed in Jan and my TSH had gone up to 17. The Endo told me we have to get your TSH down its far too high and that was at 17. You must feel absolutely dreadful.

    You should be due another blood test. I would be chasing for it and I would be pestering for the results. You should definitely being referred to an Endo.

  • Yes tsh 80+ , my dr did a diagram showing me how the thyroid works and wrote the amount...but my t4 is a little high too at 5+, he did say I must be feeling terrible so I was so relieved that I actually burst into tears. I guess I was just hoping for a miracle drug to take and feel amazing. He did say I should feel better in a week. I just appreciate this group, its helping my mind for sure.

  • It would help to know what your range is for T4. 5 would be very low on any UK range but different units may used elsewhere. (I assume that is Free T4?)

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