Confused! Diagnosed with hypothyroidism two months ago but now told I have graves disease

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Hi everyone

A bit of background - A few months prior to be diagnosed I was experiencing the following, my hair was falling out, memory loss, brain fog and extreme tiredness. I questioned if I had thyroid issues (my gran has overactive).

My results came back: Free T4 8.2, TSH 35

I was diagnosed with hypothyroidism and was prescribed 50mg Levothyroxine. Since being on this I have felt worse but some things have improved, still experience memory/concentration issues. I went back to the GP due to chest pain, ECG came back fine and doctor ordered more tests, TPO and BNP. I had one great week then all of sudden felt overwhelmed with work whilst at work and locked myself in the bathroom crying. I am now off sick - I have become a recluse, dont want to see anyone or do anything, lost my confidence, lack of appetite. I now have the results back and the doctor says I have graves and just wants to give me anti-depressants.

The results are: T4 14.3, TSH 9.3, Thyroid Peroxide

2615 ku/L <59

Other than feeling hopeless, confused and wanting my life back...does anybody understand the results and why would I still be needing Levo if I have graves!

Thank you in advance

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15 Replies

  • Posted

    These findings seem contradictory.  Graves is a common cause of hyperthyroidism BUT your TSH is high which indicates hypothyroidism! Your general symptoms, tiredness etc, indicate hypo as well, so it looks like you do need the medication and question the Graves diagnosis.
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    • Posted

      Hi Dave

      Many thanks for your response, that is what I thought! This time is confusing enough without trying to get my around that diagnosis. I thought they would have said hasimotos! Searched the internet trying for find an answer but no luck. I will be seeing doctor again this week so will get an explanation!

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  • Posted

    Hi,

    I sympathize with you for the last year I have been in and out of the hospital as well as work. I felt like I was losing my mind. My relationship with my fiancé has taken a turn for the worst because he couldn't understand it. I had hyper but I had the iodine ablation last year because I had 2 nodules. So I never had my thyroid removed and my levels were never high like your TSH levels mine were either 4. Or 5. I was put on levo by the hospital my endo never thought I needed meds then when the levo started causing heart palpitations and tremors I went to hospital and they prescribed synthroid that caused the same issues so my endo said no to thyroid medication so all I take now is my HBP meds vitamin D and iron pills because I lost a lot of hair. I do experience anxiety so I also have Xanax. So with hyper/ hypo their is a lot of symptoms that comes along with it (exhaustion,anxiety, depression, etc). So now I'm going to another city to see a specialist that deals with thyroid/endocrine system because my exhaustion is terrible. Do you have an endo there are also other thyroid meds you can try levo/synthroid don't work for everybody they sure didn't work for me. Good luck

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    • Posted

      Hi Chiffon

      Thank you for your reply. It sounds like you've had a tough time. I think one of the most difficult things to deal with is the loneliness of this condition and the uncertainity of not knowing when you will feel better. It is hard for our partners, they just want to make it all better, but we just need people to understand the here and now - that is enough for me at this moment in time. I am lucky that my partner is starting to understand this and dealing with one day at a time.

      I am waiting for a scan due to a multi nodule goiter.

      I live in the UK, I have only seen the doctor but will ask to be referred, i think i will have a fight on my hands though. I don't think levo is doing me any good, never felt so bad!

      How frustrating for you, that you are still not well and searching for the answer. I hope you find some answers!

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    • Posted

      Hello,

      Yes it has been rough but since I'm not on thyroid meds I don't have the tremors or heart palpitations so I do feel a lot better than few months ago but still going to see a specialist that deal with strictly thyroid and endocrine. I have a endo which she is okay but she really just base how I should feel off my labs I need someone to go a step further so I need another opinion.

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  • Posted

    I have been hypothyroid for about 2-3 years. Eventually some months ago I got round to asking the GP if it was Hashimotos. He looked back to my initial results and said no, it was Graves. I couldn't understand it either and looked all over the Internet without finding an answer. I even posted a question on health unlocked but got no joy. So if you do find out, please let me know! 

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    • Posted

      Hi Carolyn

      Thank you for responding. I have read so much on the internet but also can't get to the bottom of it! Catherine's response below is interesting! I have always thought Hasimotos is the autoimmune for hypo and Graves is the autoimmune for hyper - maybe it isn't that simple. Just so suprisingly difficult to find anything on the internet about this! I will keep you updated.

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    • Posted

      Hi Flosscandi

      I have again checked various sites on the Internet and it is clearly stated on all of them that  Graves is hyper not hypo. Next time I see the doc I will try to remember to ask. Thanks for saying you will keep me updated. This anomaly is beginning to bug me! 

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  • Posted

    Hi Flosscandi, 

    Grave's disease is one of two hypothyroid conditions. Hashimoto's disease is the other. Both are autoimmune disease. Both are treated with thyroid medication as indicated, in order to get your bloodwork into normal ranges.

    Thyroid medication generally takes three a month's top level out, so if you check bloodwork before then, it's a guideline to see if you're on the right track, but you have to be careful because, it's still in the process of adjusting. On the other hand, if you wait the full three months to adjust every time, you can see how this could take a long time for someone who needs a high dose. So docs try to balance these factors.

    Check the normal ranges on your blood work and see where your numbers are. The levothyroxin is T4 only, so it's a good idea to also check the T3 to make sure it's getting converted as needed by your body. Your body needs both T3 and T4 to be in range. Once your bloodwork is in range, if you still aren't feeling well, your doc has to also consider your symptoms because you could have some other factor such as high rT3 or anti-thyroxin antibodies that decrease the functionality of your thyroxin.

    Good luck, hope you feel better!

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    • Posted

      Hi Catherine

      Thank you so much for your informative response! I have been so confused and didn't think to ask the doctor when he told me - must have been the brain fog!

      As my TSH is still high I was confused why I was diagnosed with graves. It makes sense that i remain on Levo due to my levels. Just didn't know that graves had anything to do with being hypo.

      I have also read a little about T3 and that Levo is a T4 med, I definately want to get my T3 checked - will just have to fight with the doctor i imagine! I think my T3 levels are not right and that is why i feel like this.

      Thanks for the tips, good to know what else could be going on and gives me some options.

      Thanks again!

       

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    • Posted

      Hi Flosscandi, glad I could help. You're on track. You'll want to get both your T4 and T3 checked. This should give you more information.

      The other thing that might be helpful if you haven't already done it, is a thyroid ultrasound.

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  • Posted

    Hi Flosscandi,

    Everything is going to be alright...

    HYPO (low) thyroidism is the symptom. Graves Disease is the cause. In my case I also had the symptom Hypothyroidism but the cause was thyroid cancer.

    I want you to take a big, deep breath, wipe your tears, and know you will always find me available.

    Levothyroxine replaces the hormone your body is no longer producing. 50 mg would kill anyone. Thyroid replacement hormones are measured in micrograms, mcg, as opposed to milligrams, mg.

    The thyroid is the thermostat of our body. Think about what happens when you turn your home thermostat down...temperature drops, it gets cold...cold enough and pipes freeze...

    Hypothyroidism can manifest in many ways:

    Fatigue

    Weakness

    Weight gain or increased difficulty losing weight

    Coarse, dry hair

    Dry, rough pale skin

    Hair loss

    Cold intolerance (you can't tolerate cold temperatures like those around you)

    Muscle cramps and frequent muscle aches

    Now back to Levothyroxine...remember this is micrograms...a very very small unit of measurement...it takes at minimum 6 weeks for the medication change you begin today to show up in your blood test. Levothyroxine is not like a pain pill that reduces pain in 45 minutes.

    You will take blood tests on a tight schedule until your levels stabilize.

    Stability is a balance between your free T4 level (the main thyroid hormone called thyroxine) and your TSH level (the hormone produced by the pituitary gland).

    As your TSH level increases, the T4 level will decline. Picture a seasaw. Using Levothyroxine your doc will work to hold the seasaw level. Yes, you already feel like your riding that seasaw...you are. In time you will level and your hair will grow back in...my returned thicker.

    TSH stands for thyroid-stimulating hormone...the larger the number, the more hypothyroidic you are. The first TSH number you shared was 35! Just knowing 35 told me that your T4 would be an unusually small number.

    Thyroid-stimulating hormone, or

    TSH , is produced by the pituitary gland. TSH tells the thyroid gland how much T4 (thyroxine) and T3 (triiodothyronine) to produce. The TSH level in your blood reveals how much T4 your pituitary gland is asking your thyroid gland to make. If your TSH levels are abnormally high, it means you have an underactive thyroid...

    Normal TSH levels for the average adult range from 0.4 - 4.0 mIU/L (milli-international units per liter)

    This is a lot to absorb. Take your time, in a short time, you will understand it.

    One more item...I have tailored this to Graves Disease which is a low T4 with a high TSH.

    The emotional roller coaster...all adverse thyroid levels cause us to be hyperemotional...we cry easily WHEN OUR THYROID FUNCTION IS OFF...it is a symptom just like hair loss is.

    Warm hugs

    Judith

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    • Posted

      Hi Judith, thanks for the info. I have Hashimoto's and have always wondered why my TSH never tested super high. Your comments about Graves disease explains some of the. differences between the two conditions, and why the tests are done the way the are, and why they don't always detect Hashimoto's by looking at TSH. Interesting. Thanks!

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    • Posted

      Hi Catherine,

      You are welcome...

      So I thought the following laboratory chart would interest you...

      TSH

      FREE T4

      FREE OR TOTAL T3

      PROBABLE INTERPRETATION

      High

      Normal

      Normal

      Mild (subclinical) hypothyroidism

      High

      Low

      Low or normal

      Hypothyroidism

      Low

      Normal

      Normal

      Mild (subclinical) hyperthyroidism

      Low

      High or normal

      High or normal

      Hyperthyroidism

      Low

      Low or normal

      Low or normal

      Non-thyroidal illness; rare pituitary (secondary) hypothyroidism

      Normal

      High

      High

      kind regards

      judith

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  • Posted

    I have under active thryroid like yourself was given levothyroxine 50mg was worse of for taking it I came of it after 2 months made me mega depressed brain fog and massive tiredness and joint pain getting out of bed just to go to work was impossible.  Now waiting to se an Endocronologist can take weeks though.  Gp was trying to say my thryroid was getting better on it and since having another blood test one of my readings has gone from 5 to 19 - I'm taking sea kelp tabs by H & B 3 x a day which has helped with tiredness but I know alot of these symptoms are caused by the menopause. He's trying to get me to go on HRT but trying to avoid this as my grandma had breast cancer so trying not to as this is all they seem to have on offer.  All cheap medication that the UK gp's hand out no wonder we never cure the symptoms.

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