Need to Complain About Dr.

[OKShakespeare]

I am in the USA. I have had Hashimoto's since the 1980's and saw my endocrinologist several months back. She gave me a prescription for thyroid meds which lowered my TSH to .40. I called and asked for a reduction in the prescription strength and sent her the blood test . Now she insists I have a telephone "visit" which I will be billed for. My last face to face visit was covered partially by insurance but I am still paying $233 out of pocket for that. How can my telephone visit do anything for me except add to the amount due? I see this as a way to get more cash out of my pocket and into hers. It is like the dr. is holding my meds hostage until I pay more just to get the new prescription dose.

[tattybogle]

Hi OKShakespeare ,

a) if you want to reduce Levo dose slightly by yourself , it can sometime be done easily without altering prescription..... depending on what size of tablets you already have.. what size have you got, and what is current dose ?

b) is the TSH 0.4 the only reason you want to reduce dose ?

TSH 0.4 is near the bottom of most TSH reference ranges , it's unlikely to be much below range.

TSH 0.4 is not a reason by itself to reduce Levo dose.

There are some increased long term 'risks' associated with low TSH, but not until TSH goes below 0.04 , which is quite a lot lower than 0.4

The more important results to look at before considering whether to lower a dose of Levo, are the fT4 and fT3 results ,and whether there are any symptoms of overmedication.

[OKShakespeare in reply to tattybogle]

I have 90 mg but I think I need 1 grain which is 65 mg so cutting the pill in half doesn't work. I don't know why (except for incompetence) but the lab has forgotten 2X in a row to code the T-4 as a requested test so all I have in addition to TSH is the reverse T-3 which at 19 is within the lab's range but is pretty high. Now I am thinking that I will have to go again for tests just because of that missing T-4. Meanwhile I am searching online for a pharmacy that does not require a prescription in order to get the meds I need. I know that I may not be 100% on the mark with the dosage, but the dr. won't do any better. It is hit or miss and results will be shown after I take the new dosage for a few months and test again. I don't think I have any symptoms of overmedication. In fact I rarely have any knowledge of physical symptoms related to over or under medication. Basically I am relying on the tests to tell me what to do. I am concerned about overmedication for at least this reason-bone loss. I am small boned and a senior so don't want to develop osteoporosis as a result of poor med management.

[tattybogle in reply to OKShakespeare]

Ah i see , i though you meant Levo . NDT makes it a bit trickier to fine tune dose .

if high,.... rT3 can indicate fT4 is a bit high , but high rT3 also has a multitude of other causes . So , get your fT4 ( and fT3) done ... if it's in range, then this recent paper may re-assure that the low TSH in isolation is not an issue re. bone loss. ( in patients whose TSH is deliberately kept low by higher doses of Levo, to prevent recurrence of their thyroid cancer)

healthunlocked.com/thyroidu... . (Bone Mineral Density in Adult Survivors of Pediatric Differentiated Thyroid Carcinoma: A Longitudinal Follow-Up Study)

Also, this is the paper i referred to showing no increase in risks until TSH went below 0.04 ~ a very large ,long term study of patients (on Levo ). academic.oup.com/jcem/artic... (Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy )

Just posting these so you know that if you try a lower dose and it feels rubbish , you may be ok on current dose as long as fT4 / fT3 are not high .

[Jaydee1507 Administrator]

This is a UK board mainly that willknow little about USA insurance issues. Hope you get it sorted.

[SlowDragon Administrator]

You need to get TSH, Ft4 and Ft3 tested together

Test thyroid levels early morning and day before test, ideally you would split your NDT into 3 smaller doses spread through the day, with last dose approx 8-12 hours before test

Very important to test vitamin D, folate, B12 and ferritin at least once a year

On NDT it’s common to have very low TSH……lower than you currently have

Most important results are always Ft3 followed by Ft4

Many people on NDT split the dose …..perhaps more in morning than afternoon or 50-50

[OKShakespeare in reply to SlowDragon]

I really need to know those numbers in order to be sure that the dose is too high. The doc said to change my dosage habits and take a full dose about 3:30 -4:00 AM if I get up at night and usually I do about that time. It may be the reason that the prescribed dosage which is what I had been taking previously at a different time became too much. I don't know. I never heard about dose splitting although I have heard that some take it one day and then skip a day. The problem with splitting a dose might be the directions to "take on empty stomach". When would that be? Between breakfast and lunch and then again between lunch and dinner? That would mean remembering more than once a day to do it and it would be very likely I would miss doses.

[SlowDragon Administrator in reply to OKShakespeare]

Then splitting is not for you ….

Because most important thing is to take same dose every day

Just testing TSH is useless though

[Me1157]

We have a lot in common, so here's my take on your situation and thyroid concerns.

I've lived in both places; I spent 22 years in Florida, and Drs want to cover their butt. Are you on medicare yet? If not, ask her office what her CASH rate is without insurance, as you're struggling financially. Often they have a much lower cash rate when they don't have to file the insurance, as that takes time. Most Drs. understand financial hardship and want to help their patients if yours doesn't find another. It might be that she doesn't want to reduce your dose without checking you out.

I've had Hashimoto's since 1979, and you need more test results than just the TSH to find out what's going on with you. The correct test to ask for....is a full thyroid panel with antibodies and reverse T3. Ask for a copy of your lab results and upload them here so we can see what's going on with them.

Listen to Slow Dragon; you need to test vitamin D, folate, B12, and ferritin at least once a year. I take supplements to improve them. These vitamin levels are important to the correct function of your thyroid.

My TSH is usually around .01, and I'm feeling good. My Florida Dr. used to take into account my symptoms as well as the blood test results. I have to pay for a private Endo in the UK because my NHS Endo - only goes by the TSH, and NOTHING else matters to her. When I've tried to alter my TSH to what they think is normal here....I get VERY ill...Normal is what is normal for you, and for me to feel well, my TSH is always out of range on the lab results.

How it was explained to me; the TSH - is the team's coach. As long as the other players on the team ( the other T's and vitamins) are doing their job, the TSH doesn't have to do anything. The T3 - in the NDT you're taking - is doing the job of the TSH. I'm on armor thyroid. The TSH comes from your pituitary gland and not your thyroid. It helps convert T4 into T3 - the active form of thyroid hormone converted in some people convert into reverse T3. In NDT - you're getting this hormone in the medicine, so the TSH doesn't have to convert it.

I used to take my full dose when I woke up to pee around 4 am. Now I split the dose. Half then with water and half mid-afternoon around 3 pm - I eat lunch at 1 pm. So my stomach is empty as possible and I don't eat or drink anything but water for at least an hour later. This is a common practice in both places and works better.

You can crush the pills and take them in powder form if that's easier for you to estimate your dose, or you can buy a pill splitter from CVS or Walgreens.

Your Bone density: They worried about mine, too, and thought it was a way to convince me to lower my meds. A recent scan proved that mine is above average for most women in their sixties. So, bone loss due to what some doctors think is over-medication isn't always right.

If your insurance doesn't cover a scan, get one on medicare when you qualify. Regular exercise and a healthy diet can improve your bone density. Dancing around the house to your favorite songs is an effortless way to get your exercise done if you can't get to the gym. I also take good calcium/magnesium every other month in the evening with my supper. I'm gluten-free and don't eat processed foods or eat or drink anything with additives or preservatives.

I hope this helps and you consider the advice. Your TSH is just a number; you must go off how you feel in conjunction with everything else. Perhaps, this is why your Dr. wants to see you.

[OKShakespeare in reply to Me1157]

I can't say I actually feel a difference whether my TSH is 1 or 8.

I am on Medicare with additional insurance that won't kick in until I meet the deductible so I would be adding a good amount to the fee I already owe from 2022. Good idea about asking for a cash rate. I will ask this morning and see how that goes. If no cash rate I will call one of those $29.95 services for a prescription.

I recently tested for D, folate, and B12. D was a little low at 45 so I am taking D. Folate was off the charts high because I have been taking it for high Homocysteine. Didn't get B12 or ferritin tested this time but usually both are fine. I don't need the antibodies testing because I have Hashimoto's and probably don't have much active thyroid gland now after all these years. My C reactive protein is also high so my guess is that results from the thyroid antibodies as well as Lyme Disease.

Gluten free is a hard diet to follow. If you can do it, more power to you. It probably makes a difference for you and might for me but I am not motivated enough to do it right now.

[Me1157 in reply to OKShakespeare]

FYI - I have hashimotos and had RAI treatment in 1979 to kill off my thyroid. In 2003 I became very ill with my thyroid despite taking the meds. At that time I found a holistic endo who tested everything and my antibodies were off the charts they were so high. He put me on amour thyroid and started me on the road to good health.

I test the antibodies every year sonce them. I also found a Dr of functional medicine she decided it was time to change my diet. Gluten Maybe therefree is a pain in the butt, when you try and eat gluten free foods it's worse. I eat naturally gluten free foods. The only grain I do ok with is oats. Sour dough bread doesn't mess with me that much as long as its a weekly and not a daily thing. Ezekiel bread is ok toasted for sandwiches. I eat plenty of fruit, oats, protein shake or eggs for breakfast, soup and or salad at lunch, meat, chicken fish or veggies at dinner. Snacks are greek yogurt or fruit. Once you get used to it, you feel a lot better. Perhaps for you little changes over time and not all at once would be best.

Florida has some good medicare plans for seniors without a lot of extra costs. Maybe there other plans where you are?

[OKShakespeare in reply to Me1157]

Well that is interesting about the antibodies against a gland you didn't have. I have to give that some thought to figure out what that actually means and what effect it has when the thyroid is out of the picture. You sound pretty disciplined about the gluten free. Do you have support at home or are you preparing for only yourself? My husband would not be a happy camper if I didn't prepare his pasta favorites. Preparing separate meals could be done but would be time consuming... Oh well sometimes you do what you have to do . Your meal plan sounds realistic and not at all as if you are giving up too much. I am in NC with Medicare plus supplement G. A new year and a new deductible.

[Me1157 in reply to OKShakespeare]

Your hubby doesn't have to give up give up pasta - perhaps use a slightly different type. Orzo is an Italian type of pasta. It's often made from semolina flour, a type of flour that comes from durum wheat. Durmum wheat is anti amflamitory and might not mess with you that much, you can also try bean or lentil pasta or rice noodles. My hubby has whole wheat bread for his sanwiches and I usually add a little more starches like potatoes to his plate. I found with mine, if I don't tell him it's gluten free, just a new recipe that I think he'll like, he more often than not he likes it.

Florida has medicare plans for people on limited income. One of them is called Florida Freedom and I think you pay $75 to see your doctor and it works like a typical HMO. You might have something similar in NC. These plans are worth hunting out. I have friends on it that love it. Some of your other health conditions may settel down once your diet and thyriod is right. I get chronic fatique and fibro when mine isn't right. I've also had angina and an innocent heart murmur when it's been off too. Other I know have had all kinds of things.

I was told when I drank the RAI - that it would go to the part of my thyriod that was over active and not so much to the hypoactive part. Whether this was true or not I have no idea. In 1979 they were just starting this treatment. I was living in Tx at the time. I must still have some minor thyoid function as I'm not on maximum dose of amour.

[OKShakespeare in reply to Me1157]

You might want to check on orzo. The shape of orzo is like rice but from what I've read it is the same wheat as spaghetti or lasagne. If you are eating it you may feel some consequences if you need to stay gluten free. The rice pasta is OK I think.

I don't qualify for any low income programs so I am on my own after Medicare and my supplement pay their share. This last visit to the endocrinologist left me owing over $450 for 15 minutes of her time and a prescription that didn't work out.

I have had one of those functional murmurs for a long time. Maybe it is related to the Hashimoto's. I never thought about it before.

[Brightness14]

I have a good idea move to France.

[Batty1]

If you haven’t seen the Endo in a year or your seeing a new Endo then yes buy law your required to be seen or talked to before they can administer medication … I personally hate telemedicine worse thing that has come out of covid in my opinion doesn’t actually save you any money and the care is just poor. Sadly it doesn’t seem as if you have much choice unless you can get your GP to deal with your thyroid issues.

[OKShakespeare in reply to Batty1]

Saw endo in Oct. She prescribed too high a dose. I just need a downward adjustment.

[Batty1 in reply to OKShakespeare]

What issues were you having that made you think dose was too high? Are you taking any other medications like antidepressants?

Post your last blood test results with ranges and the Amount of thyroid meds your taking.

[OKShakespeare in reply to Batty1]

Despite having no issues I thought I should be tested since my dosage had been changed by the dr. I don't take other meds but wasn't surprised that the TSH was not optimal because over the years it is either way too high or way too low. I only have my reverse T3 and TSH results . The lab accidently didn't do the T4.

[BonnieG123]

I think that the phone visit would be in both your best interests. I don’t think any doctor would prescribe a lower dosage without, a the very least, talking with you.

[OKShakespeare in reply to BonnieG123]

Not trying to be smart here but during my last in person visit which was $764 of which I am expected to pay $456 out of pocket after insurance pays its share, the dr. didn't touch me, didn't suggest a sonogram, and didn't ask how I was feeling or discuss much. I have had Hashi for over 30 years so I know how it goes. The only benefit I can imagine goes to the dr who will take more of my hard earned money and then write a prescription that may or not be the right dose.

[BonnieG123 in reply to OKShakespeare]

wow! Can you go to someplace recommended by your health plan where it will be covered?

[OKShakespeare in reply to BonnieG123]

I don't qualify free or low cost medical care. I think I am stuck with the price as both Medicare and my supplement paid a share. It is a ridiculous amount of money. Just a few visits is the price of a cruise! Well the dr. will be taking the cruise that patients can't afford.

[Poniesrfun]

Many of us in the US have simply given up on endocrinologists and manage our testing and thyroid prescriptions with our primary care provider - equivalent to a UK GP except many PCPs in the US seem to understand more about thyroid issues than some endos. It is important, when working with a PCP, that we have educated ourselves to ensure we get the testing we need. I always double check my lab order before going to the lab (especially important if one needs cancer markers checked) but most PCPs have no problem ordering all the "basics" - including FT4, FT3, antibodies and related ferritin, B12/folate, etc.

Patti in AZ

[OKShakespeare in reply to Poniesrfun]

My general doesn't feel comfortable doing the job of a specialist. Sometimes I don't know what specialist to see for an issue.

[Tabbygirl22]

Most insurances cover phone visits 100 %.All drs make u see or have a visit before they renew meds

[OKShakespeare in reply to Tabbygirl22]

Medicare and supplements have a deductible before coverage begins. I saw Dr. in October and the prescription she gave me was too strong so it seems logical that after seeing the test results she would lower the dosage without seeing me. There are online dr.'s that will prescribe after a consult for $30. That seems reasonable since this is not a new prescription and is only an adjustment.