After over 9 years of going back and forth to doctors and complaining of symptoms of hypothyroidism but been told everything is fine thyroid-wise, I have finally been able to receive prescription for dessicated thyroid 30mg this morning.
I went back to the doctor who suggested I might have lupus and told her I really think itâs my thyroid causing all my symptoms. She listened and agreed to start me on dessicated thyroid 30mg for 2 months to see if it helps me feel better. I picked up the prescription and am still in disbelief that I finally will be able to start treatment.
Itâs my early Christmas present. I got very lucky this year.
I have talked to a lot of wonderful persons on this forum and they are a big reason that I insisted on getting thyroid treatment. Thank you all so very much đđ. I feel very emotional and hopeful. I hope this message will encourage people who think they have a thyroid problem to get checked and donât get discouraged if it is difficult to get the treatment they need.
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Seahorse76
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Reading through your earlier post and replies - you mentioned about your low Ferritin and how you found it difficult to improve levels. Which one are you taking - how much ? Do you take VitC with each dose to aid absorption. What was your last B12 - and Folate level ? As you live in Vancouver how is your VitD ? All these very important vitamins and minerals need to be optimal for your thyroid hormones to work well - both your own and the ones you take.
So I am concerned taking the NDT may not be a huge success if all your ducks are not in a row
Thank you so much for your message đ! I received it just before I started my first quarter of the thyroid dessicated pill, (which I decided to postpone for now until my ferritin goes up more as I realize itâs a better start this way.)
I was away the whole day and just got home, itâs almost 7pm here already, I am so tired đ´.
My ferritin was at 27 a week or so ago so itâs still very low. I was taking a form of polysaccharide iron I believe, which is called feramax. It was one pill/day of 150 mg elemental iron for over a year accompanied by orange juice on an empty stomach... I had heard ferritin can take a really long time to go up so I wasnât too concerned until my last result which was the lowest I have ever had...
I have now switched to a Canadian iron supplement called ferapro, which contain 30mg ferrous fumarate, as well as 175 mg ascorbic acid, 1000 mcg methylcobalamine, 100 mg glycine, and 80 mcg folate ( the methyl-tetrahydrofolate form.) It doesnât contain any preservative or additive and the doctor thinks I will absorb this supplement better than the previous one. I hope so. I only started taking it a week ago or 10 days ago so it still too early to know if itâs working.
My latest B12 reading was 474 so it seemed okay. My vitamin D hasnât been tested since last March ( we have to pay extra to get the test done here). It was at 85 then. I am taking 1000-2000 unit vitamin D3/ day. Maybe I should increase my dose to 3000, but I am afraid of overdoing it.
I didnât get tested for the folate but my homocysteine level was good I think: it was at 4 and the range is supposed to be below 15 umol/L. Mercury was tested and very good too: I was at 3 for normal range below 29 nmol/L đ.
I also started taking a b complex called Integrative Therapeutics which has the real folate in it (216 mcg). It also contains an extra 500mcg active B12 and 50 mg of active niacin, 25 mg B6, 25 mg of B1 and B2, 125 mg inositol, and 50 mg pantothenic acid. I found difficult to find a well-balanced B complex that doesnât have too much of certain b vitamins like B3 or B6. I hope this one is good.
I have a thyroid ultrasound in a week so thatâs also a reason to not start right away with the dessicated thyroid.
2 years ago I found a fantastic doctor but it was his last day at the clinic... He ordered a CT scan and ultrasound for my thyroid. Apparently, the left side still had the same nodule since 2009 and the left side where the nodule was, was also absorbing more iodine than the right side... But I had been told everything was normal until yesterday. That was upsetting, especially when the doctor told me she couldnât treat me anyway đ°. So I went to another doctor right after ( I got lucky she was available that day), and here is how I got my prescription after spending too much time in clinicsđ.
I realize I have been on a long rant. Please forgive me Marzđ.
You need to start your NDT straight away don't wait for your vitamins to improve you can take them together. When I took Thyroid S I was also taking Vitamin D spray and selenium tabs ... I didn't need iron because mine is over range because of inflamation but I have had low ferritin when I was first diagnosed because I was left 2 years without any treatment. Doctors in the UK have no idea about thyroid disease imho. Also I have found people in US and in other countries are in the same predicament as us here in the UK. You should start on 1/4 of grain which is low and then increase after a month or sooner if you can tolerate it. If you start to feel jittery you can always reduce your dose by a 1/4 and then wait a week and try to increase again. I was on 1 1/2 grains and felt ok but because of my Graves' I had to stop it because my thyroid suddenly had a flare up and I became over active. You always go by how you feel with NDT and this is the way Doctors treated us in the past before there was blood tests and the TSH test which really does not give a good indication of how your thyroid is functioning you need to test the T4 and T3 as well. Doctors here do sometimes ask for a full thyroid function test which my Doctor did when I was admitted to hospital with a thyroid storm. What he got was TSH and a liver function test because the labs saw my TSH was 0.70 and in range so followed NHS regulations and did not test T4 or T3 even though I think mine were above the range. Also have you had your antibodies tested? Mine are 4000 because my thyroid is under attack because of the Graves' Disease I also have a multi-nodular goitre which I have scanned every 2 years to check to see if any of the nodules have increased. I am not medically trained but I have a lot of knowledge about thyroid disease which I have gained from sites in the US like Elaine Moore's and sites here in the UK.
Here is a link for Elaine Moore's site there is a lot of information on there and you can post questions to her about blood results.
So nice to hear from you đ! But I am really sorry that you had a thyroid storm in the past, what a nightmaređ°. That must have been a terrifying experience. I am so glad you are okayđ. Thatâs a shame itâs difficult to be treated by doctors all over the world...That this is such a struggle for people who can be in their most vulnerable states. As if being unwell wasnât enough đ.
I didnât realize I could take thyroid medication at the same time I am dealing with some deficiencies, thatâs great to know. I was a bit worried that I would end up having a bad reaction to the NDT and heart palpitations because of my low ferritin level. Do you think starting the NDT now would interfere with the results of my thyroid ultrasound? I have the ultrasound in a week from now.
Are you being treated for Gravesâ Disease at this time? Your antibodies are really high. My cousin who is the same age as me (31) has it, but is in remission now. She was so thin and exhaustedđ˘.
I did test the TPO antibodies a week or so ago and they are only at 19, but they werenât positive either when I was diagnosed in 2009.
My anti-TG antibodies were at 165 in 2009 for normal range below 115. Thatâs too bad the doctor didnât get them tested with the TPO this time...
Thank you so much for all your advices and recommendations! I have never heard of Elaine Moore and curious to learn more about her đ.
Have a very lovely Saturday đ! It must be really early in the UK.
Don't worry about having a bad reaction with NDT it can leave your system quite quickly. I have had palpitations while taking Thyroid S because your body isn't used to suddenly having thyroxine in your blood stream after being without it for so long. Just breathe though them and sit quietly but do not panic. When I had my thyroid storm in July after attending a friends wedding I was sweating shaking and my heart rate was 120 bpm. I felt like I was dying and panicked. When I was admitted to A & E the nurses had to hold me down to take an ecg because they could not get a proper reading. My heart was normal btw and all this was caused by my thyroid dumping a large amount of thyroxine into my blood stream. I also think having several glasses of wine at the wedding and too many coffees did not help so I am going to take it easy at my husband works do next Saturday because I don't want to become ill again. I am not being treated because there is no treatment because my TSH is 0.70 and they cannot treat antibodies because this is a auto immune disease and there is no cure I'm afraid. As for having a thyroid scan the medication will not affect it all and it might actually reduce its swelling if it is swollen like mine because your thyroid will be given a rest by not being stimulated by the pituitary gland to make more thyroxine when it is struggling. I have been told this by a very wise woman in the US, she also told me to put a cold compress on my thyroid when I feel like I am choking.
Wow a heartbeat of 120 bpm is certainly a lot ! My âmaximumâwas around 90 (I think), when I had a bad reaction to an anti-anxiety medication ( Buspar) and I remember feeling so close to passing out and worried I wouldnât wake up đ¨. But same here, EKG was fine too. I donât think I will try other anti-anxiety medicine though . I am trying to meditate again. I did it everyday for a month but ended up stopping because I didnât make the time for it anymore.
I hope youâll have a wonderful time at your husbandâs work party next Saturday. Coffee is quite a powerful drink, easy to overdo it. I have overdone it too many times to count . Especially when I was teaching. I would combine coffee and caffeine pills because I was always so exhausted. I switched to matcha tea and earl grey.
Maybe there will be some special âChristmas teasâ or hot apple cider or mulled wine at the party. Those are great drinks for the season. I wonder if having an autoimmune disease makes us more vulnerable when we drink alcohol? The liver might be overworked? I know I canât drink, not even a glass of wine as I am guaranteed a hangover the next day. Despite drinking so much water. But I am fine with thatđ.
Thank you for letting me know itâs safe to start my medicine tomorrow. I will go slow with a quarter pill/day as you recommended. It has really been a long time since I took thyroid pills and I want to be kind to myself. I have had enough anxiety as it is.
Good to know too about the cold compress. I have had days when I had neck pain, but so far my thyroid is not enlarged and I only have one nodule that I know of.
I suppose having a healthy diet can be a helpful tool when dealing with our antibodies and autoimmune disease in general. I stopped eating gluten 4years ago and it has helped a bit. I also avoid soy as much as I can. Hard to stop eating cheese though.
You are doing so many good things to help yourself. Really hope everything goes well for you ... I was only going by the posts here over the years - about people not doing so well on NDT when nutrients were low. It is possible they were not even addressing the low levels so am sure you will be fine. I do not have a personal experience so was just conveying what I had read here. Ah - lots of rest is healing too ! - try not to fight the fatigue. Low iron = low oxygen = fatigue đ
Thank you Marz for your words of positivity and encouragement đ
Fighting the fatigue has been a huge problem for me for years, I felt inadequate if I didnât feel energetic enough... My mother instilled this in me as she was constantly critical of what I did or didnât do, or how fast I cooked/cleaned the house when growing up. But with a healthy distance geographically and emotionally, I find myself more in tune with my needs and I know itâs part of my healing process.
I took my first quarter of NDT this morning đ. I am a bit sick as I did too much yesterday and am resting today and tomorrow.
Try to rest as much as you can .. I was out shopping yesterday and I now have pins and needles in one of my hand because of carrying heavy shopping. Today I will just be cooking a Sunday lunch and watching some Christmas films and generally chilling out.
Thatâs a wonderful program đ! I overdid it too yesterday and was stuck to my bed and couch all day today. I will probably watch some Christmas movies tomorrow, itâs about time. I hope your hands feel better, pins and needles can get so annoying/painful. You might need to eat dark chocolate: itâs rich in magnesium đ.
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