Misdiagnosis of underactive thyroid

Hormones
1

I'm in a very strange situation where I have been on thryoid medication for 8 years and was diagnosed with underactive thyroid when I was 19.

It has now come to light that the only reason I was diagnosed was that I was suffering with exhaustion and my Tsh was slightly abnormal. My thryoid antibodies were within normal range then and they still are now.

The doctors have been seeing how tired I am and kept increasing my meds to the point where my hair was falling out and I was suffering palpitations. I then got desperate and saw a private endocrinologist who said he was almost certain I have been over-medicated and may have never needed medication in the first place.

Has anyone else been in this situation? How is this possible and how does this happen when underactive thryoid is such a common disorder?

All the other potential vitamin deficiencies have been tested including adrenals etc and they have come back normal and I'm waiting on a thryoid ultrasound to confirm that it is healthy.

They said it may be too late to completely take me off levothyroxine (I was on 150mg and I'm now down to 75mg and dont feel any worse but equally dont feel any better). They say my thryoid may not be able to recover after eight years at such a high level of medication but they will try and reduce it as low as possible.

Is it possible for my thryoid to start making its own hormones again if I never had the disease in the first place?

I feel devastated at the amount of times I went to the doctors complaining that I've felt awful for years and it's taken me to go to a private endo to get some answers. Im worried I'll be on this toxic medication for life

2

Some drugs given for nonthyroid conditions have the side effect of inhibiting production of thyroid hormone within the thyroid gland. If these drugs are taken in large dosages or for a long time, hypothyroidism may result.

Use of lithium as a treatment for certain psychiatric conditions is an example of drug-induced hypothyroidism. Almost half of all people who take lithium may develop an enlarged thyroid, although less than a quarter of them will actually develop symptoms of hypothyroidism.

Another example is use of the iodine-containing drug amiodarone (Cordarone) for heart arrhythmias.   Were you on any of these meds and now your not?

Subacute thyroiditis is an inflammatory thyroid condition of unclear origin. It usually causes only temporary and mild hypothyroidism - that is, it produces a relatively less serious form of hypothyroidism that goes away on its own.Subacute thyroiditis is an uncommon disorder that can occur in men or women of any age. The characteristic inflammation in the thyroid often follows an upper respiratory infection, and patients often come to a doctor's attention because of noticeable and painful enlargement of the thyroid gland.

Infections. Viral and bacterial infections can temporarily damage the thyroid gland. This causes a short-term form of the condition. Hypothyroidism caused by infection usually does not result in permanent hypothyroidism

Too much or too little iodide can cause hypothyroidism. If there is a deficiency of iodide, the body cannot manufacture thyroxine. About 200 million people around the world have hypothyroidism because of insufficient iodine in their diets. Too much iodide is a signal to inhibit the conversion process of thyroxine to T3. The end result in both cases is inadequate production of thyroid hormones.   In the past...  did you have enough salt with iodine in it in your diet?

Postpartum thyroiditis means inflammation of the thyroid following pregnancy, (from post, meaning "after," and partum, meaning "birth"wink. It occurs in the first six months after delivery in about 5% to 9% of women. Typical symptoms relate to an initial phase of hyperthyroidism (with symptoms of rapid heart rate, increased sweating, nervousness) and a later phase of hypothyroidism (with fatigue, dry skin, feeling cold, depression).   Were you preggo at or around the time of diagnosis?

Eating disorders such as anorexia nervosa or bulimia nervosa. In these patients, reduced thyroid function may be an adaptation to malnutrition.  Have you had eating disorders in the past and not now?

That's all the information I can help you with.. as I am not familiar with being diagnosed and then possibly not.  Good luck.

3

Thanks for that melissa. I wasnt pregnant around diagnosis but was suffering with severe depression and took antidepressants. I dont believe I took any of the drugs you mention or lithium etc.

Maybe it was viral I really don't know. It's frustrating and I wish they had looked into it further at the time, rather than giving me drugs for life and leaving me to my own devices. sad

4

I believe they put it down to iodide deficiency at the time, but I recently got a copy of my notes and there was a question mark against this comment which makes me more angry that they have done this and not found the definitive cause

5

Maybe you can sue.  Thank goodness you have the notes, especially the one with question mark for the iodine.  Yes...  they should of looked further into it.  I would imagine they are at fault for all your suffering.  They do have an iodine test and they should of perfermed it!   I would talk to a lawyer if I were you.  No matter what caused your possibly temporary hypothyroidism, they should of found out the cause as your doctor.  Especially being they did test for anti-bodies and that was negative.  I'm sorry to hear you are going through all of this because of your doctors negligence.  I would imagine there is something you can do being they have possibly ruined your life and the possible need of being on meds the rest of you life when it all could have been avoided.  Alot of lawyers give free consiltations.. you may want to look into it.  Good luck!

6

My husband said I should sue and if I had the energy I probably would but part of me thinks that it's not going to bring my good health back and maybe more trouble than its worth. I do however feel very bitter as I wrote to my local MP and health secretary telling them my story and I just got a standard response of "the diagnosis procedures are fine and levothyroxine treats most people with the condition" when clearly something is very wrong here and they should have referred me straight away. At the time they told me everything was normal and I didn't think I had any reason to doubt that. It's just after years of struggling, losing jobs, friends, hair, social life that I thought there must be something wrong that needs to be looked into. Your very right in that it has totally destroyed my life and I'm the shadow of the person I used to be. Im very lucky I have such a supportive husband who grew up with his step mum suffering with chronic fatigue. I've been to so many doctors hundreds of times saying I'm unwell and they would always try and give me antidepressants and send me on my way!!

I didn't realise there was an iodine test- do you know if you are you able to take this test whilst taking levothyroxine? X

7

This is what if found, but I couldn't find antything about these test on levothyroxine.

Iodine Testing Method #1: One sample urine test. This is the urine test typically performed by most medical doctors to determine the levels of iodine. While this isn’t a completely useless test, it isn’t as accurate as the iodine loading test, which is described below.

Iodine Testing Method #2: Blood test. This seems to be an accurate way to test the iodine levels, but the problem is that most labs don’t do such testing.

Iodine Testing Method #3: Iodine Patch Test. This is a general test which can help determine whether someone is deficient in iodine.  It involves drawing a 2 x 2 patch on your forearm using a 2% tincture of iodine.  For someone who isn’t iodine deficient, the patch shouldn’t begin to fade until after 24 hours.  Someone who is deficient in iodine will see the patch disappear in a shorter amount of time.  Those with a severe iodine deficiency will see the patch begin to fade or disappear completely in 12 hours or less.

Once again, this isn’t the most accurate test (although it definitely is the least expensive of the four).  Even though it isn’t accurate, it can help to give a general idea as to whether someone is deficient in iodine, and if they will need to supplement with iodine.  However, I think 24 hours is a random number, and I feel that 12 to 14 hours is more accurate in determining how long the iodine should last before fading significantly.  While someone can start off with this test, eventually it is recommended that they receive an iodine loading test to get a more specific reading.

Iodine Testing Method #4: Iodine Loading Test. This test measures the excretion of iodine over a 24-hour period.  It admittedly isn’t the most convenient test, as you need to collect EVERY urine sample within a 24-hour period.  Before this test you need to take a 50 mg tablet of iodine.  Although taking such a high dosage on a regular basis without prior testing isn’t recommended, taking it one time shouldn’t cause problems with most people.  This usually includes people with Hashimoto’s Thyroiditis.  However, many people with Hashimoto’s Thyroiditis are still cautious about taking this test due to the ingestion of iodine, which is fine, as they can always choose one of the other tests if they’re really concerned about any negative effects of taking the iodine.

Ideally someone who has a sufficient amount of iodine should excrete at least 90% of the iodine over a 24-hour period.  If it is less than this then the person has an iodine deficiency.  The lower the excretion rate, the greater the iodine deficiency.

These are the iodine test I know of ... oh there is at home ones too.  But not sure how accurate they are.

This method is the simplest and least expensive.  The only material you need is tincture of iodine (the original colored solution, not the clear one).  Paint a swatch of the iodine over your stomach, approximately 3 inches in diameter, then observe how long it takes the color to fade from your skin. The faster the color fades, the greater the chance of iodine deficiency. It’s a sign of severe iodine deficiency if the color fades in less then 4 hours. If the color remains after 24 hours, then it’s likely you are iodine sufficient. 

Hope this helps some.

 

8

I just read that Levothyroxine actually contains iodine.  So, I would imagine that would give you a false normal reading even if you were truely low in iodine.  Sorry.

9

Thank you for that information I will bring it up with my doctor when I see him. It's crazy how complex these issues are. When I was diagnosed I thought underactive thyroid was just a condition, I didn't realise that there were different causes of it.

Hopefully they will eventually get to.the bottom of it. Hoping to drop my meds to 50mg this week as my t4 levels are the higher side of normal and tsh the lower end so I've not given up hope that my thryoid won't fight back just yet smile

Thanks for the advice and information I am very grateful

10

No problem. To be honest I doubt it's something the nhs would test for anyway. They don't tend to waste a great deal of money testing things that may be useful (!).

Hopefully I'll be able to come off the meds and the initial cause won't matter eventually x

11

Your welcome.  Sending prayers your way!  Hope everything turns out in your favor and that you heal nicely from the meds the doc gave you that you didn't need so long.

12

Thank you xx

13

I'm really sorry to hear about your experience. There is a pharmacist who reportedly cured herself of hypothyroidism - maybe you can too. I registered on her site to receive free emails. One of her emails said about not being able to eat a wide range of foods and that she found out the cause was a parasite called blastocystis hominis. This list of foods is identical to the list I can't eat. So I researched it and the research all supported what she was saying. So hopefully all her other stuff is reluable to.

You know how you are searching for alternative causes for hypothyroidism? On the blastocystis reasearch foundation site there is a paper about a person whose hypothyroidism was cured when this parasite was eliminated from his body.

14

Hello Caz:

Feeling tired can come from abuild up of phosphates in the blood and is the cause of Chronic Fatigue Syndrome.(CFS).

Doctor's are poorly informed on newer conditions which CFS is. Also many jumo to conclusion it is the thyroid. 

I do not see it as bleak as your own gland may not recover.  Many of times if it were to sense the hormone it may "shut off" but given time (unknown exactly how long), it will work again.

The body does try to correct damage done and it may take a while.  I had a sciatic nerve that was compressed for a year by a herniated disc in my L4 & L 5 area in my low back....numbness down left leg,  & toes. One side only!

Had back surgery where they removed the pinch, it took 3 months and I could feel my left leg, then a little over a year and I can feel my toes on my left foot. I was told I may never have the numbness leave, and also that the toes would stay that way.  I read horror stories online.

So never say never, the body will try and fix it. Levo is not toxic, but it replaces the hormone and YES, you were given too much.

All I can say is give your body a wean down slowly, eat balanced meals, get rest, do exercise and take vitamins.  Take it slow and see.  It very well may surprise you.

Regards,

Shelly

15

Hello, I had radioactive iodine treatment almost 3 years ago, then around a year ago I was informed by the consultant at my local hospital that my thyroid function had dropped sufficiently for me to start taking medication. Immediatly I was ill and stayed like that for the first two weeks before the worst of the symptoms wore off. The tiredness and the condition of my hair, nails etc never improved, but when I said to the consultant that i felt this was due to the medication, he disagreed and even wrote in a letter to my GP that he felt my other symptoms were due to stress, which I did not agree with and strongly denied. On a subsequent visit back to the hospital I wasthen told I required to increase my thyroid medication, the increase in medication never worked and in fact caused me all manner of problems. In the end I decided I had had enough and went to my own GP about it all. I was lucky in the fact my appt that day was with one of the better doctors in my pracitce who was prepared to listen to me. He agreed that i should stay off the medication for some time as he wanted to see what my blood readings would be once my body was clear of all the Thyroxine medication. Bloods were taken 8 weeks after I stopped and I went back to see GP last week for results and they were normal. Turns out I had been over medicated from day one and it was the medication that was making me underactive. I knew myself something was not right and now I am so glad that I listened to my own body rather than just accepting what the consultant said. I am lucky that I found this out at a very early stage so I don't think there should be any long term issues like yourself. Consultant's do get things wrong and in your case very wrong for some considerable time. If i were you I just would not accept what your hospital is saying to you, I would demand another opinion, they created the problem an may well be playing down any long term health effects. 

16

Thanks for that shelly that is reassuring.

I didn't know that about phosphates. In the UK the message is generally "they don't know the cause and there is no cure for chronic fatigue syndrome" so I always used to get sent away by the doctors and there are nt any CFS specialists in my area they can refer me to.

Is there anything that can be done about phosphate s? And is there test for that? Would be curious to know as I'm still feeling really rough.

Glad to see you recovered too x

17

Hi mags,

That's really interesting to hear. It was actually a GP who originally "diagnosed" me and put me on the meds and I'm not with that surgery anymore.

Luckily I have a really patient doctor and endo who are working together to try and get me off the meds and make me feel better and have tested everything else even things like lymes disease that has similar symptoms.

Due to the fact I was diagnosed by another practice and they didn't have any notes on my original shaky diagnosis and underlying cause, all the doctors at other practices just assumed that I definitely had it (and why wouldn't they, you would think that the other doctor must have been sure enough to put me on it in the first place).

My doctor was so apologetic and said that he hadn't even considered that the original diagnosis may not have been correct. It wasn't until the private endo took a look at my small frame and hair loss that he thought I had been massively pumped full of levothyroxine for years.

The same thing happened to me, they kept telling me I was stressed /depressed and tried to give me antidepressants at every opportunity. It's so frustrating when you as the patient know there is something fundamentally wrong with the way you have been treated. X

18

Hello Caz:

There are ways to fix high phosphates by diet mainly. Avoid whole grain breads, cereals,organ meats,  sweet potatoes, asparagus, broccoli, milk, and high animal fats.  Of course we need some phosphate,  but not huge amts.

Our kidney's have to filter for us, and too much can make the kidney not work well. When that happens, it can cause a build up of phosphates, which is something they now feel can cause the CFS. 

Mostly because people are busy and eat whatever is ready made available and pop into the microwave. What we need to do is go back to cooking for ourselves and caring about our food.  Look at labels watch sodium levels also. I do read the labels and it is amazing the amts. of sodium and glucose in a product.

Yes, they can test for the phosphates level in your blood.  They have  used a medication called Effexor (Venlafaxine) for CFS, even though it was designed as an anti-depressent.  However try and change the diet a bit and see what happens. Some doc's do specilize in CFS, but finding them is the hard part.

Regards,

Shelly

 

19

Hopefully you start seeing an improvement soon, can't begin to think what it must have been like for you all these years, I only had the problem for about a year and that was bad enough ! Good luck and let us know how you get on xx

20

My blood work showed low alkaline phosphatase's.  Can you tell me what that means please?  If you know.  Thank you.